RE: Re: SD - Opinions Needed Please

[Guest guest]

Gail, Is this Doctor FULLY versed in AP therapy, especially intravenous

cleocin, to give you a jump start. All of those symptoms accompanied my SD

when

it was rampant. I never depended strictly on Minocycline. This is a life

and death situation and you need an SD doctor who will fight the insurance

company for you. I did YEARS of iv treatment along with the Minomycline.

Good

luck.

**************Wondering what's for Dinner Tonight? Get new twists on family

favorites at AOL Food.

(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

[Guest guest]

Hi Gail,

Your comment below about being sensitive to light made me immediately think

of Lyme's Disease. I also can relate to some of your other symptoms. El

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of savannahhipchick

Sent: Saturday, May 17, 2008 9:55 PM

rheumatic

Subject: rheumatic Re: SD - Opinions Needed Please

I have to ask, did you see Dr. T? I had a similar experience and am not very

happy at this

point.

>

> Just returned from Boston for a second visit to my doctor. I have diffuse

> systemic scleroderma. Unlike my first visit, which lasted about 45

minutes, and

> was open to a lot of questions and answers, this one was anything but, and

> lasted about 5 minutes. I felt so rushed and stifled, and could only get

one of

> my 10 - 12 questions and concerns out before having the door flung open

and

> my hand shook and escorted to the receptionist for my next appt.

>

> Anyway, that having been said, I am experiencing so much pain, usually in

the

> shin area, and neck area, though it travels, thats for sure. I also have

an

> area to the base of my neck near my collar bone that has swollen and gives

me

> trouble for the last week or so. In addition, my eyes are so very light

> sensitive, I am having much trouble walking, especially making turns, very

> unsteady, gums and teeth sensitive, sense of smell seems unbelievable

hightened, and I

> also have sjogrens, so of course the eternal dry mouth, eyes, etc.

>

> Do you believe that all these above symptoms are either scleroderma or

> sjogrens related, or do you believe there is yet other things going on. My

> insurance is refusing to pay anything, saying pre-existing condition, even

though it

> took 10 months to diagnose, my insurance had not kicked in until Jan. 1st

of

> this year, and frankly I am out of cash to see mega doctors.

>

> Any ideas, thoughts, suggestions would be so appreciated. I'm going

through

> an incredibly rough time, with little answers of these branch off issues.

>

> Thanks so much. Gail

>

> The only thing I am taking at this time besides armour thyroid for my

> underactive thyroid, is 100 mg. minocycline 2X daily.

>

>

>

> **************Wondering what's for Dinner Tonight? Get new twists on

family

> favorites at AOL Food.

> (http://food.

<http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001>

aol.com/dinner-tonight?NCID=aolfod00030000000001)

>

>

>

[Guest guest]

Re: Sensitivity to light, sarcoid also presents with light sensitivity.

Debbie

rheumatic Re: SD - Opinions Needed Please

I have to ask, did you see Dr. T? I had a similar experience and am not very

happy at this

point.

>

> Just returned from Boston for a second visit to my doctor. I have diffuse

> systemic scleroderma. Unlike my first visit, which lasted about 45

minutes, and

> was open to a lot of questions and answers, this one was anything but, and

> lasted about 5 minutes. I felt so rushed and stifled, and could only get

one of

> my 10 - 12 questions and concerns out before having the door flung open

and

> my hand shook and escorted to the receptionist for my next appt.

>

> Anyway, that having been said, I am experiencing so much pain, usually in

the

> shin area, and neck area, though it travels, thats for sure. I also have

an

> area to the base of my neck near my collar bone that has swollen and gives

me

> trouble for the last week or so. In addition, my eyes are so very light

> sensitive, I am having much trouble walking, especially making turns, very

> unsteady, gums and teeth sensitive, sense of smell seems unbelievable

hightened, and I

> also have sjogrens, so of course the eternal dry mouth, eyes, etc.

>

> Do you believe that all these above symptoms are either scleroderma or

> sjogrens related, or do you believe there is yet other things going on. My

> insurance is refusing to pay anything, saying pre-existing condition, even

though it

> took 10 months to diagnose, my insurance had not kicked in until Jan. 1st

of

> this year, and frankly I am out of cash to see mega doctors.

>

> Any ideas, thoughts, suggestions would be so appreciated. I'm going

through

> an incredibly rough time, with little answers of these branch off issues.

>

> Thanks so much. Gail

>

> The only thing I am taking at this time besides armour thyroid for my

> underactive thyroid, is 100 mg. minocycline 2X daily.

>

>

>

> **************Wondering what's for Dinner Tonight? Get new twists on

family

> favorites at AOL Food.

> (http://food.

<http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001>

aol.com/dinner-tonight?NCID=aolfod00030000000001)

>

>

>

[Guest guest]

My experience with Dr. T. was the same. I figured out that once he sees you,

there is not much else he can do except to give you 6 months worth of Minocin

prescriptions. For people coming from far away, this seems like a long journey

for nothing. He told me to come back in a year and gave me a year's worth of

prescriptions. I got very much better pretty fast. What I did was have my

blood tested in New York and brought my results to him. He barely glanced at

them and said he treats patients, not blood work. I have since moved to Corpus

Christi, Tx., but I am very much thankful for him getting me back on my feet.

Since I won't be traveling to Boston anymore, I am searching for a Marshall

Protocol literate doc to help me stay with the program. If any of you

Texans in my area know of a good doc who believes in the Protocol, I would

welcome some referrals. It doesn't have to be a Rheumatologist necessarily. I

need a doc who is open to new ideas. Closed minded

ones need not apply. Thank you all so much. The best to all of you. I

continue getting better and better. I am still on Minocin, and clindamycin. I

will soon be adding Azithromycin and have been on the Benicar faithfully since

starting on the protocol in September 2007 ~~~~ Dolores & Mike Rosner

martysfolks2004@....

ehgooding <ehgooding@...> wrote: Hi Gail,

Your comment below about being sensitive to light made me immediately think

of Lyme's Disease. I also can relate to some of your other symptoms. El

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of savannahhipchick

Sent: Saturday, May 17, 2008 9:55 PM

rheumatic

Subject: rheumatic Re: SD - Opinions Needed Please

I have to ask, did you see Dr. T? I had a similar experience and am not very

happy at this

point.

>

> Just returned from Boston for a second visit to my doctor. I have diffuse

> systemic scleroderma. Unlike my first visit, which lasted about 45

minutes, and

> was open to a lot of questions and answers, this one was anything but, and

> lasted about 5 minutes. I felt so rushed and stifled, and could only get

one of

> my 10 - 12 questions and concerns out before having the door flung open

and

> my hand shook and escorted to the receptionist for my next appt.

>

> Anyway, that having been said, I am experiencing so much pain, usually in

the

> shin area, and neck area, though it travels, thats for sure. I also have

an

> area to the base of my neck near my collar bone that has swollen and gives

me

> trouble for the last week or so. In addition, my eyes are so very light

> sensitive, I am having much trouble walking, especially making turns, very

> unsteady, gums and teeth sensitive, sense of smell seems unbelievable

hightened, and I

> also have sjogrens, so of course the eternal dry mouth, eyes, etc.

>

> Do you believe that all these above symptoms are either scleroderma or

> sjogrens related, or do you believe there is yet other things going on. My

> insurance is refusing to pay anything, saying pre-existing condition, even

though it

> took 10 months to diagnose, my insurance had not kicked in until Jan. 1st

of

> this year, and frankly I am out of cash to see mega doctors.

>

> Any ideas, thoughts, suggestions would be so appreciated. I'm going

through

> an incredibly rough time, with little answers of these branch off issues.

>

> Thanks so much. Gail

>

> The only thing I am taking at this time besides armour thyroid for my

> underactive thyroid, is 100 mg. minocycline 2X daily.

>

>

>

> **************Wondering what's for Dinner Tonight? Get new twists on

family

> favorites at AOL Food.

> (http://food.

<http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001>

aol.com/dinner-tonight?NCID=aolfod00030000000001)

>

>

>

[Guest guest]

I had the same experience with Dr. T. He prescribed

the minocine.My second appointment with him lasted

barely 10 min. I thought why I should bother myself to

take a 8 hours round trip by bus to Boston , paying

lots of money (I don't have health insurance) to see

him for few min. I found another AP doctor and am

happy with him. He is great.

soheila

--- mike rosner <martysfolks2004@...> wrote:

> My experience with Dr. T. was the same. I figured

> out that once he sees you, there is not much else he

> can do except to give you 6 months worth of Minocin

> prescriptions. For people coming from far away,

> this seems like a long journey for nothing. He told

> me to come back in a year and gave me a year's worth

> of prescriptions. I got very much better pretty

> fast. What I did was have my blood tested in New

> York and brought my results to him. He barely

> glanced at them and said he treats patients, not

> blood work. I have since moved to Corpus Christi,

> Tx., but I am very much thankful for him getting me

> back on my feet. Since I won't be traveling to

> Boston anymore, I am searching for a Marshall

> Protocol literate doc to help me stay with the

> program. If any of you Texans in my area know of

> a good doc who believes in the Protocol, I would

> welcome some referrals. It doesn't have to be a

> Rheumatologist necessarily. I need a doc who is

> open to new ideas. Closed minded

> ones need not apply. Thank you all so much. The

> best to all of you. I continue getting better and

> better. I am still on Minocin, and clindamycin. I

> will soon be adding Azithromycin and have been on

> the Benicar faithfully since starting on the

> protocol in September 2007 ~~~~ Dolores & Mike

> Rosner martysfolks2004@....

>

> ehgooding <ehgooding@...> wrote: Hi

> Gail,

>

> Your comment below about being sensitive to light

> made me immediately think

> of Lyme's Disease. I also can relate to some of your

> other symptoms. El

>

> _____

>

> From: rheumatic

> [mailto:rheumatic ] On Behalf

> Of savannahhipchick

> Sent: Saturday, May 17, 2008 9:55 PM

> rheumatic

> Subject: rheumatic Re: SD - Opinions Needed Please

>

> I have to ask, did you see Dr. T? I had a similar

> experience and am not very

> happy at this

> point.

>

>

>

>

> >

> > Just returned from Boston for a second visit to my

> doctor. I have diffuse

> > systemic scleroderma. Unlike my first visit, which

> lasted about 45

> minutes, and

> > was open to a lot of questions and answers, this

> one was anything but, and

>

> > lasted about 5 minutes. I felt so rushed and

> stifled, and could only get

> one of

> > my 10 - 12 questions and concerns out before

> having the door flung open

> and

> > my hand shook and escorted to the receptionist for

> my next appt.

> >

> > Anyway, that having been said, I am experiencing

> so much pain, usually in

> the

> > shin area, and neck area, though it travels, thats

> for sure. I also have

> an

> > area to the base of my neck near my collar bone

> that has swollen and gives

> me

> > trouble for the last week or so. In addition, my

> eyes are so very light

> > sensitive, I am having much trouble walking,

> especially making turns, very

>

> > unsteady, gums and teeth sensitive, sense of smell

> seems unbelievable

> hightened, and I

> > also have sjogrens, so of course the eternal dry

> mouth, eyes, etc.

> >

> > Do you believe that all these above symptoms are

> either scleroderma or

> > sjogrens related, or do you believe there is yet

> other things going on. My

>

> > insurance is refusing to pay anything, saying

> pre-existing condition, even

> though it

> > took 10 months to diagnose, my insurance had not

> kicked in until Jan. 1st

> of

> > this year, and frankly I am out of cash to see

> mega doctors.

> >

> > Any ideas, thoughts, suggestions would be so

> appreciated. I'm going

> through

> > an incredibly rough time, with little answers of

> these branch off issues.

> >

> > Thanks so much. Gail

> >

> > The only thing I am taking at this time besides

> armour thyroid for my

> > underactive thyroid, is 100 mg. minocycline 2X

> daily.

> >

> >

> >

> > **************Wondering what's for Dinner Tonight?

> Get new twists on

> family

> > favorites at AOL Food.

> > (http://food.

>

<http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001>

> aol.com/dinner-tonight?NCID=aolfod00030000000001)

> >

> >

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

> removed]

> >

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

To Sohelia: Congratulations, e-mail me your new docs name. Hope you are doing

better. I am doing fine. The new job and new home is perfect for continuing on

the Marshall. The office is attached to the house as is the garage. The apt.

is upstairs, so there is no commute between job and house. Mike and I run the

business from the office from 9-5:30. We releave each other all day long, so it

doesn't even feel like a job. Most times we sit in the office together and take

care of customers as they walk in. We rent spaces in a storage facility and

collect the monthly rents on the occupied units. It is very ideal. Love the

whole set-up.~~~~Love, Dolores & Mike

soheila A <soadl80@...> wrote: I had the same experience with Dr.

T. He prescribed

the minocine.My second appointment with him lasted

barely 10 min. I thought why I should bother myself to

take a 8 hours round trip by bus to Boston , paying

lots of money (I don't have health insurance) to see

him for few min. I found another AP doctor and am

happy with him. He is great.

soheila

--- mike rosner <martysfolks2004@...> wrote:

> My experience with Dr. T. was the same. I figured

> out that once he sees you, there is not much else he

> can do except to give you 6 months worth of Minocin

> prescriptions. For people coming from far away,

> this seems like a long journey for nothing. He told

> me to come back in a year and gave me a year's worth

> of prescriptions. I got very much better pretty

> fast. What I did was have my blood tested in New

> York and brought my results to him. He barely

> glanced at them and said he treats patients, not

> blood work. I have since moved to Corpus Christi,

> Tx., but I am very much thankful for him getting me

> back on my feet. Since I won't be traveling to

> Boston anymore, I am searching for a Marshall

> Protocol literate doc to help me stay with the

> program. If any of you Texans in my area know of

> a good doc who believes in the Protocol, I would

> welcome some referrals. It doesn't have to be a

> Rheumatologist necessarily. I need a doc who is

> open to new ideas. Closed minded

> ones need not apply. Thank you all so much. The

> best to all of you. I continue getting better and

> better. I am still on Minocin, and clindamycin. I

> will soon be adding Azithromycin and have been on

> the Benicar faithfully since starting on the

> protocol in September 2007 ~~~~ Dolores & Mike

> Rosner martysfolks2004@....

>

> ehgooding <ehgooding@...> wrote: Hi

> Gail,

>

> Your comment below about being sensitive to light

> made me immediately think

> of Lyme's Disease. I also can relate to some of your

> other symptoms. El

>

> _____

>

> From: rheumatic

> [mailto:rheumatic ] On Behalf

> Of savannahhipchick

> Sent: Saturday, May 17, 2008 9:55 PM

> rheumatic

> Subject: rheumatic Re: SD - Opinions Needed Please

>

> I have to ask, did you see Dr. T? I had a similar

> experience and am not very

> happy at this

> point.

>

>

>

>

> >

> > Just returned from Boston for a second visit to my

> doctor. I have diffuse

> > systemic scleroderma. Unlike my first visit, which

> lasted about 45

> minutes, and

> > was open to a lot of questions and answers, this

> one was anything but, and

>

> > lasted about 5 minutes. I felt so rushed and

> stifled, and could only get

> one of

> > my 10 - 12 questions and concerns out before

> having the door flung open

> and

> > my hand shook and escorted to the receptionist for

> my next appt.

> >

> > Anyway, that having been said, I am experiencing

> so much pain, usually in

> the

> > shin area, and neck area, though it travels, thats

> for sure. I also have

> an

> > area to the base of my neck near my collar bone

> that has swollen and gives

> me

> > trouble for the last week or so. In addition, my

> eyes are so very light

> > sensitive, I am having much trouble walking,

> especially making turns, very

>

> > unsteady, gums and teeth sensitive, sense of smell

> seems unbelievable

> hightened, and I

> > also have sjogrens, so of course the eternal dry

> mouth, eyes, etc.

> >

> > Do you believe that all these above symptoms are

> either scleroderma or

> > sjogrens related, or do you believe there is yet

> other things going on. My

>

> > insurance is refusing to pay anything, saying

> pre-existing condition, even

> though it

> > took 10 months to diagnose, my insurance had not

> kicked in until Jan. 1st

> of

> > this year, and frankly I am out of cash to see

> mega doctors.

> >

> > Any ideas, thoughts, suggestions would be so

> appreciated. I'm going

> through

> > an incredibly rough time, with little answers of

> these branch off issues.

> >

> > Thanks so much. Gail

> >

> > The only thing I am taking at this time besides

> armour thyroid for my

> > underactive thyroid, is 100 mg. minocycline 2X

> daily.

> >

> >

> >

> > **************Wondering what's for Dinner Tonight?

> Get new twists on

> family

> > favorites at AOL Food.

> > (http://food.

>

<http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001>

> aol.com/dinner-tonight?NCID=aolfod00030000000001)

> >

> >

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

> removed]

> >

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

>

>

> [Non-text portions of this message have been

> removed]

>

>