Re: Overdue introduction

[Guest guest]

Hi Debbie,

I've never had contact with anyone before who had Crest. May I ask what

kind of treatments you have been given for it? Anything you recommend?

Does your ANA go up and down? The highest ANA I've had was over 2,000

something weird like 2,650...I can't remember exactly because it was a

weird number. I tested last month and its now negative. It bounces up

and down constantly.

I've received little treatment except for my dr treating me for

arthritis and Lyme has started trying to keep an eye on the Crest. I

went to a rheumatologist who said " there's nothing I can do for you "

charged me $350 and dismissed me.

I'm actually have trouble getting the basic care for Crest. I have to

travel long distance to my dr. So when something flares up I've had

difficulty getting treatment here in town like with the Calcinosis

nodules that have to be removed. I had a painful, infected one on my

elbow that I finally convinced a ob/gyn to remove as she is the only

one in town who will see me for anything now. The other drs in town

find out I have Lyme and Crest and they tell me they don't want

to/can't treat me or have never heard of either illness and think I am

making it up. I'm made to feel like some kind of monster for having

these illnesses.

>

> , HI...I have Scleroderma, specifically Crest type as

well...and have RA and have a lung condition from the SD...I am doing

well, and did well on the minocin for the Crest...not on it any more

but did well..

> Debbie

[Guest guest]

, HI...I have Scleroderma, specifically Crest type as well...and have RA

and have a lung condition from the SD...I am doing well, and did well on the

minocin for the Crest...not on it any more but did well..

Debbie

rheumatic Overdue introduction

Just wanted to say hello to all here. I've been lurking on and off, but

since I replied to a post finally thought I should at least identify

myself. I'm a 38 yr old woman with Lyme disease, severe arthritis, an a

rare autoimmune illness called CREST Syndrome. Except some of my drs

debate that the autoimmune illness isn't the real deal and think it was

brought on my the Lyme. I have been on antibiotics for 2.5 yrs for the

Lyme. I had it 16 yrs before I could get a diagnosis despite approx 18

tick bites and several rashes! I have also had Bartonella which

finally got rid of I think and also mycoplasm infections. Its been

interesting to see some symptoms I had for years go away with long-term

antibiotic treatment.

I'm currently on the Schardt protocol for Lyme using Diflucan 200mg

daily for 50 days then alternating 50 days with an antibiotic which

currently is Minocin. Schardt suggests alternating with a penicillin

abx, but I am allergic to those. Minocin is also experimentally used to

treat CREST plus I have severe CNS issues so the dr felt Minocin was

the logical choice with its anti-inflammatory properties and ability to

cross the blood-brain barrier.

Is there anyone here with similar illness? Any doctors here who have

suggestions or comments on my treatment?

[Guest guest]

Hi ,YES, lyne is probably what brought on your scleroderma.My

doctor suspected that it had brought mine on also but tests came back

negative and now we know that the cause was celiac disease.I am now in

full remission by using antibiotics and diflucan. Lynne G./SD

tickmeister1 wrote:

> Just wanted to say hello to all here. I've been lurking on and off, but

> since I replied to a post finally thought I should at least identify

> myself. I'm a 38 yr old woman with Lyme disease, severe arthritis, an a

> rare autoimmune illness called CREST Syndrome. Except some of my drs

> debate that the autoimmune illness isn't the real deal and think it was

> brought on my the Lyme. I have been on antibiotics for 2.5 yrs for the

> Lyme. I had it 16 yrs before I could get a diagnosis despite approx 18

> tick bites and several rashes! I have also had Bartonella which

> finally got rid of I think and also mycoplasm infections. Its been

> interesting to see some symptoms I had for years go away with long-term

> antibiotic treatment.

>

> I'm currently on the Schardt protocol for Lyme using Diflucan 200mg

> daily for 50 days then alternating 50 days with an antibiotic which

> currently is Minocin. Schardt suggests alternating with a penicillin

> abx, but I am allergic to those. Minocin is also experimentally used to

> treat CREST plus I have severe CNS issues so the dr felt Minocin was

> the logical choice with its anti-inflammatory properties and ability to

> cross the blood-brain barrier.

>

> Is there anyone here with similar illness? Any doctors here who have

> suggestions or comments on my treatment?

>

>

>

>

[Guest guest]

Hi, folks,

Did anyone see Dr. HH Whitman in NJ? He uses the AP, and I thought

I might see him. Would like to get people's experiences with him.

Thanks,

On Oct 17, 2007, at 9:05 PM, lynneandsantos wrote:

>

> Hi ,YES, lyne is probably what brought on your scleroderma.My

> doctor suspected that it had brought mine on also but tests came back

> negative and now we know that the cause was celiac disease.I am now in

> full remission by using antibiotics and diflucan. Lynne G./SD

>

> tickmeister1 wrote:

>

> > Just wanted to say hello to all here. I've been lurking on and

> off, but

> > since I replied to a post finally thought I should at least identify

> > myself. I'm a 38 yr old woman with Lyme disease, severe

> arthritis, an a

> > rare autoimmune illness called CREST Syndrome. Except some of my drs

> > debate that the autoimmune illness isn't the real deal and think

> it was

> > brought on my the Lyme. I have been on antibiotics for 2.5 yrs

> for the

> > Lyme. I had it 16 yrs before I could get a diagnosis despite

> approx 18

> > tick bites and several rashes! I have also had Bartonella which

> > finally got rid of I think and also mycoplasm infections. Its been

> > interesting to see some symptoms I had for years go away with

> long-term

> > antibiotic treatment.

> >

> > I'm currently on the Schardt protocol for Lyme using Diflucan 200mg

> > daily for 50 days then alternating 50 days with an antibiotic which

> > currently is Minocin. Schardt suggests alternating with a penicillin

> > abx, but I am allergic to those. Minocin is also experimentally

> used to

> > treat CREST plus I have severe CNS issues so the dr felt Minocin was

> > the logical choice with its anti-inflammatory properties and

> ability to

> > cross the blood-brain barrier.

> >

> > Is there anyone here with similar illness? Any doctors here who have

> > suggestions or comments on my treatment?

> >

> >

> >

> >

>

>

[Guest guest]

Hi , yes, I have seen DR Whitman for about 7 yrs now...I adore him...he is

the best...veryyyyy good and has helped me enormously..

Debbie Gibson

Re: rheumatic Overdue introduction

Hi, folks,

Did anyone see Dr. HH Whitman in NJ? He uses the AP, and I thought

I might see him. Would like to get people's experiences with him.

Thanks,

On Oct 17, 2007, at 9:05 PM, lynneandsantos wrote:

>

> Hi ,YES, lyne is probably what brought on your scleroderma.My

> doctor suspected that it had brought mine on also but tests came back

> negative and now we know that the cause was celiac disease.I am now in

> full remission by using antibiotics and diflucan. Lynne G./SD

>

> tickmeister1 wrote:

>

> > Just wanted to say hello to all here. I've been lurking on and

> off, but

> > since I replied to a post finally thought I should at least identify

> > myself. I'm a 38 yr old woman with Lyme disease, severe

> arthritis, an a

> > rare autoimmune illness called CREST Syndrome. Except some of my drs

> > debate that the autoimmune illness isn't the real deal and think

> it was

> > brought on my the Lyme. I have been on antibiotics for 2.5 yrs

> for the

> > Lyme. I had it 16 yrs before I could get a diagnosis despite

> approx 18

> > tick bites and several rashes! I have also had Bartonella which

> > finally got rid of I think and also mycoplasm infections. Its been

> > interesting to see some symptoms I had for years go away with

> long-term

> > antibiotic treatment.

> >

> > I'm currently on the Schardt protocol for Lyme using Diflucan 200mg

> > daily for 50 days then alternating 50 days with an antibiotic which

> > currently is Minocin. Schardt suggests alternating with a penicillin

> > abx, but I am allergic to those. Minocin is also experimentally

> used to

> > treat CREST plus I have severe CNS issues so the dr felt Minocin was

> > the logical choice with its anti-inflammatory properties and

> ability to

> > cross the blood-brain barrier.

> >

> > Is there anyone here with similar illness? Any doctors here who have

> > suggestions or comments on my treatment?

> >

> >

> >

> >

>

>

[Guest guest]

I’m seeing Dr Whitman today. I’ve been seeing him for about 10 years, and

I recommend him!

Carol E from NY

From: rheumatic [mailto:rheumatic ] On Behalf

Of Beckman

Sent: Wednesday, October 17, 2007 9:42 PM

rheumatic

Subject: Re: rheumatic Overdue introduction

Hi, folks,

Did anyone see Dr. HH Whitman in NJ? He uses the AP, and I thought

I might see him. Would like to get people's experiences with him.

Thanks,

On Oct 17, 2007, at 9:05 PM, lynneandsantos wrote:

>

> Hi ,YES, lyne is probably what brought on your scleroderma.My

> doctor suspected that it had brought mine on also but tests came back

> negative and now we know that the cause was celiac disease.I am now in

> full remission by using antibiotics and diflucan. Lynne G./SD

>

> tickmeister1 wrote:

>

> > Just wanted to say hello to all here. I've been lurking on and

> off, but

> > since I replied to a post finally thought I should at least identify

> > myself. I'm a 38 yr old woman with Lyme disease, severe

> arthritis, an a

> > rare autoimmune illness called CREST Syndrome. Except some of my drs

> > debate that the autoimmune illness isn't the real deal and think

> it was

> > brought on my the Lyme. I have been on antibiotics for 2.5 yrs

> for the

> > Lyme. I had it 16 yrs before I could get a diagnosis despite

> approx 18

> > tick bites and several rashes! I have also had Bartonella which

> > finally got rid of I think and also mycoplasm infections. Its been

> > interesting to see some symptoms I had for years go away with

> long-term

> > antibiotic treatment.

> >

> > I'm currently on the Schardt protocol for Lyme using Diflucan 200mg

> > daily for 50 days then alternating 50 days with an antibiotic which

> > currently is Minocin. Schardt suggests alternating with a penicillin

> > abx, but I am allergic to those. Minocin is also experimentally

> used to

> > treat CREST plus I have severe CNS issues so the dr felt Minocin was

> > the logical choice with its anti-inflammatory properties and

> ability to

> > cross the blood-brain barrier.

> >

> > Is there anyone here with similar illness? Any doctors here who have

> > suggestions or comments on my treatment?

> >

> >

> >

> >

>

>

[Guest guest]

Thanks so much!

On Oct 18, 2007, at 12:05 AM, DEBBIE GIBSON wrote:

> Hi , yes, I have seen DR Whitman for about 7 yrs now...I adore

> him...he is the best...veryyyyy good and has helped me enormously..

> Debbie Gibson

> Re: rheumatic Overdue introduction

>

> Hi, folks,

> Did anyone see Dr. HH Whitman in NJ? He uses the AP, and I thought

> I might see him. Would like to get people's experiences with him.

> Thanks,

>

> On Oct 17, 2007, at 9:05 PM, lynneandsantos wrote:

>

> >

> > Hi ,YES, lyne is probably what brought on your scleroderma.My

> > doctor suspected that it had brought mine on also but tests came

> back

> > negative and now we know that the cause was celiac disease.I am

> now in

> > full remission by using antibiotics and diflucan. Lynne G./SD

> >

> > tickmeister1 wrote:

> >

> > > Just wanted to say hello to all here. I've been lurking on and

> > off, but

> > > since I replied to a post finally thought I should at least

> identify

> > > myself. I'm a 38 yr old woman with Lyme disease, severe

> > arthritis, an a

> > > rare autoimmune illness called CREST Syndrome. Except some of

> my drs

> > > debate that the autoimmune illness isn't the real deal and think

> > it was

> > > brought on my the Lyme. I have been on antibiotics for 2.5 yrs

> > for the

> > > Lyme. I had it 16 yrs before I could get a diagnosis despite

> > approx 18

> > > tick bites and several rashes! I have also had Bartonella which

> > > finally got rid of I think and also mycoplasm infections. Its been

> > > interesting to see some symptoms I had for years go away with

> > long-term

> > > antibiotic treatment.

> > >

> > > I'm currently on the Schardt protocol for Lyme using Diflucan

> 200mg

> > > daily for 50 days then alternating 50 days with an antibiotic

> which

> > > currently is Minocin. Schardt suggests alternating with a

> penicillin

> > > abx, but I am allergic to those. Minocin is also experimentally

> > used to

> > > treat CREST plus I have severe CNS issues so the dr felt

> Minocin was

> > > the logical choice with its anti-inflammatory properties and

> > ability to

> > > cross the blood-brain barrier.

> > >

> > > Is there anyone here with similar illness? Any doctors here who

> have

> > > suggestions or comments on my treatment?

> > >

> > >

> > >

> > >

> >

> >

[Guest guest]

Thanks!

On Oct 18, 2007, at 1:35 AM, Carol Esposito wrote:

> I’m seeing Dr Whitman today. I’ve been seeing him for about 10

> years, and

> I recommend him!

>

> Carol E from NY

>

> From: rheumatic [mailto:rheumatic ]

> On Behalf

> Of Beckman

> Sent: Wednesday, October 17, 2007 9:42 PM

> rheumatic

> Subject: Re: rheumatic Overdue introduction

>

> Hi, folks,

> Did anyone see Dr. HH Whitman in NJ? He uses the AP, and I thought

> I might see him. Would like to get people's experiences with him.

> Thanks,

>

> On Oct 17, 2007, at 9:05 PM, lynneandsantos wrote:

>

> >

> > Hi ,YES, lyne is probably what brought on your scleroderma.My

> > doctor suspected that it had brought mine on also but tests came

> back

> > negative and now we know that the cause was celiac disease.I am

> now in

> > full remission by using antibiotics and diflucan. Lynne G./SD

> >

> > tickmeister1 wrote:

> >

> > > Just wanted to say hello to all here. I've been lurking on and

> > off, but

> > > since I replied to a post finally thought I should at least

> identify

> > > myself. I'm a 38 yr old woman with Lyme disease, severe

> > arthritis, an a

> > > rare autoimmune illness called CREST Syndrome. Except some of

> my drs

> > > debate that the autoimmune illness isn't the real deal and think

> > it was

> > > brought on my the Lyme. I have been on antibiotics for 2.5 yrs

> > for the

> > > Lyme. I had it 16 yrs before I could get a diagnosis despite

> > approx 18

> > > tick bites and several rashes! I have also had Bartonella which

> > > finally got rid of I think and also mycoplasm infections. Its been

> > > interesting to see some symptoms I had for years go away with

> > long-term

> > > antibiotic treatment.

> > >

> > > I'm currently on the Schardt protocol for Lyme using Diflucan

> 200mg

> > > daily for 50 days then alternating 50 days with an antibiotic

> which

> > > currently is Minocin. Schardt suggests alternating with a

> penicillin

> > > abx, but I am allergic to those. Minocin is also experimentally

> > used to

> > > treat CREST plus I have severe CNS issues so the dr felt

> Minocin was

> > > the logical choice with its anti-inflammatory properties and

> > ability to

> > > cross the blood-brain barrier.

> > >

> > > Is there anyone here with similar illness? Any doctors here who

> have

> > > suggestions or comments on my treatment?

> > >

> > >

> > >

> > >

> >

> >

[Guest guest]

I had my first visit with Dr. Whitman last month, and I was very impressed with

him.

Roni

Re: rheumatic Overdue introduction

>

> >

>

> > Hi, folks,

>

> > Did anyone see Dr. HH Whitman in NJ? He uses the AP, and I thought

>

> > I might see him. Would like to get people's experiences with him.

>

> > Thanks,

>

> >

>

> > On Oct 17, 2007, at 9:05 PM, lynneandsantos wrote:

>

> >

>

> > >

>

> > > Hi ,YES, lyne is probably what brought on your scleroderma.My

>

> > > doctor suspected that it had brought mine on also but tests came

>

> > back

>

> > > negative and now we know that the cause was celiac disease.I am

>

> > now in

>

> > > full remission by using antibiotics and diflucan. Lynne G./SD

>

> > >

>

> > > tickmeister1 wrote:

>

> > >

>

> > > > Just wanted to say hello to all here. I've been lurking on and

>

> > > off, but

>

> > > > since I replied to a post finally thought I should at least

>

> > identify

>

> > > > myself. I'm a 38 yr old woman with Lyme disease, severe

>

> > > arthritis, an a

>

> > > > rare autoimmune illness called CREST Syndrome. Except some of

>

> > my drs

>

> > > > debate that the autoimmune illness isn't the real deal and think

>

> > > it was

>

> > > > brought on my the Lyme. I have been on antibiotics for 2.5 yrs

>

> > > for the

>

> > > > Lyme. I had it 16 yrs before I could get a diagnosis despite

>

> > > approx 18

>

> > > > tick bites and several rashes! I have also had Bartonella which

>

> > > > finally got rid of I think and also mycoplasm infections. Its been

>

> > > > interesting to see some symptoms I had for years go away with

>

> > > long-term

>

> > > > antibiotic treatment.

>

> > > >

>

> > > > I'm currently on the Schardt protocol for Lyme using Diflucan

>

> > 200mg

>

> > > > daily for 50 days then alternating 50 days with an antibiotic

>

> > which

>

> > > > currently is Minocin. Schardt suggests alternating with a

>

> > penicillin

>

> > > > abx, but I am allergic to those. Minocin is also experimentally

>

> > > used to

>

> > > > treat CREST plus I have severe CNS issues so the dr felt

>

> > Minocin was

>

> > > > the logical choice with its anti-inflammatory properties and

>

> > > ability to

>

> > > > cross the blood-brain barrier.

>

> > > >

>

> > > > Is there anyone here with similar illness? Any doctors here who

>

> > have

>

> > > > suggestions or comments on my treatment?

>

> > > >

>

> > > >

>

> > > >

>

> > > >

>

> > >

>

> > >

[Guest guest]

What do you have? I have antibodies to mycoplasma and have joint

pain that seems to be more like osteo but in multiple joints and

symmetrical. It's not RA though. It's inflammatory, and I have been

taking Minocin for about a year. L.

On Oct 18, 2007, at 5:09 PM, rbarna dejazzd.com wrote:

>

> I had my first visit with Dr. Whitman last month, and I was very

> impressed with him.

> Roni

> Re: rheumatic Overdue introduction

> >

> > >

> >

> > > Hi, folks,

> >

> > > Did anyone see Dr. HH Whitman in NJ? He uses the AP, and I thought

> >

> > > I might see him. Would like to get people's experiences with him.

> >

> > > Thanks,

> >

> > >

> >

> > > On Oct 17, 2007, at 9:05 PM, lynneandsantos wrote:

> >

> > >

> >

> > > >

> >

> > > > Hi ,YES, lyne is probably what brought on your

> scleroderma.My

> >

> > > > doctor suspected that it had brought mine on also but tests came

> >

> > > back

> >

> > > > negative and now we know that the cause was celiac disease.I am

> >

> > > now in

> >

> > > > full remission by using antibiotics and diflucan. Lynne G./SD

> >

> > > >

> >

> > > > tickmeister1 wrote:

> >

> > > >

> >

> > > > > Just wanted to say hello to all here. I've been lurking on and

> >

> > > > off, but

> >

> > > > > since I replied to a post finally thought I should at least

> >

> > > identify

> >

> > > > > myself. I'm a 38 yr old woman with Lyme disease, severe

> >

> > > > arthritis, an a

> >

> > > > > rare autoimmune illness called CREST Syndrome. Except some of

> >

> > > my drs

> >

> > > > > debate that the autoimmune illness isn't the real deal and

> think

> >

> > > > it was

> >

> > > > > brought on my the Lyme. I have been on antibiotics for 2.5 yrs

> >

> > > > for the

> >

> > > > > Lyme. I had it 16 yrs before I could get a diagnosis despite

> >

> > > > approx 18

> >

> > > > > tick bites and several rashes! I have also had Bartonella

> which

> >

> > > > > finally got rid of I think and also mycoplasm infections.

> Its been

> >

> > > > > interesting to see some symptoms I had for years go away with

> >

> > > > long-term

> >

> > > > > antibiotic treatment.

> >

> > > > >

> >

> > > > > I'm currently on the Schardt protocol for Lyme using Diflucan

> >

> > > 200mg

> >

> > > > > daily for 50 days then alternating 50 days with an antibiotic

> >

> > > which

> >

> > > > > currently is Minocin. Schardt suggests alternating with a

> >

> > > penicillin

> >

> > > > > abx, but I am allergic to those. Minocin is also

> experimentally

> >

> > > > used to

> >

> > > > > treat CREST plus I have severe CNS issues so the dr felt

> >

> > > Minocin was

> >

> > > > > the logical choice with its anti-inflammatory properties and

> >

> > > > ability to

> >

> > > > > cross the blood-brain barrier.

> >

> > > > >

> >

> > > > > Is there anyone here with similar illness? Any doctors here

> who

> >

> > > have

> >

> > > > > suggestions or comments on my treatment?

> >

> > > > >

> >

> > > > >

> >

> > > > >

> >

> > > > >

> >

> > > >

> >

> > > >

[Guest guest]

I have CREST scleroderma, which is now called Limited Scleroderma. I was

diagnosed in 1997 and have been on the antibiotic therapy for about 5 years.

Do you live near Dr. Whitman?

Re: rheumatic Overdue introduction

>

> > >

>

> > > >

>

> > >

>

> > > > Hi, folks,

>

> > >

>

> > > > Did anyone see Dr. HH Whitman in NJ? He uses the AP, and I thought

>

> > >

>

> > > > I might see him. Would like to get people's experiences with him.

>

> > >

>

> > > > Thanks,

>

> > >

>

> > > >

>

> > >

>

> > > > On Oct 17, 2007, at 9:05 PM, lynneandsantos wrote:

>

> > >

>

> > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > Hi ,YES, lyne is probably what brought on your

>

> > scleroderma.My

>

> > >

>

> > > > > doctor suspected that it had brought mine on also but tests came

>

> > >

>

> > > > back

>

> > >

>

> > > > > negative and now we know that the cause was celiac disease.I am

>

> > >

>

> > > > now in

>

> > >

>

> > > > > full remission by using antibiotics and diflucan. Lynne G./SD

>

> > >

>

> > > > >

>

> > >

>

> > > > > tickmeister1 wrote:

>

> > >

>

> > > > >

>

> > >

>

> > > > > > Just wanted to say hello to all here. I've been lurking on and

>

> > >

>

> > > > > off, but

>

> > >

>

> > > > > > since I replied to a post finally thought I should at least

>

> > >

>

> > > > identify

>

> > >

>

> > > > > > myself. I'm a 38 yr old woman with Lyme disease, severe

>

> > >

>

> > > > > arthritis, an a

>

> > >

>

> > > > > > rare autoimmune illness called CREST Syndrome. Except some of

>

> > >

>

> > > > my drs

>

> > >

>

> > > > > > debate that the autoimmune illness isn't the real deal and

>

> > think

>

> > >

>

> > > > > it was

>

> > >

>

> > > > > > brought on my the Lyme. I have been on antibiotics for 2.5 yrs

>

> > >

>

> > > > > for the

>

> > >

>

> > > > > > Lyme. I had it 16 yrs before I could get a diagnosis despite

>

> > >

>

> > > > > approx 18

>

> > >

>

> > > > > > tick bites and several rashes! I have also had Bartonella

>

> > which

>

> > >

>

> > > > > > finally got rid of I think and also mycoplasm infections.

>

> > Its been

>

> > >

>

> > > > > > interesting to see some symptoms I had for years go away with

>

> > >

>

> > > > > long-term

>

> > >

>

> > > > > > antibiotic treatment.

>

> > >

>

> > > > > >

>

> > >

>

> > > > > > I'm currently on the Schardt protocol for Lyme using Diflucan

>

> > >

>

> > > > 200mg

>

> > >

>

> > > > > > daily for 50 days then alternating 50 days with an antibiotic

>

> > >

>

> > > > which

>

> > >

>

> > > > > > currently is Minocin. Schardt suggests alternating with a

>

> > >

>

> > > > penicillin

>

> > >

>

> > > > > > abx, but I am allergic to those. Minocin is also

>

> > experimentally

>

> > >

>

> > > > > used to

>

> > >

>

> > > > > > treat CREST plus I have severe CNS issues so the dr felt

>

> > >

>

> > > > Minocin was

>

> > >

>

> > > > > > the logical choice with its anti-inflammatory properties and

>

> > >

>

> > > > > ability to

>

> > >

>

> > > > > > cross the blood-brain barrier.

>

> > >

>

> > > > > >

>

> > >

>

> > > > > > Is there anyone here with similar illness? Any doctors here

>

> > who

>

> > >

>

> > > > have

>

> > >

>

> > > > > > suggestions or comments on my treatment?

>

> > >

>

> > > > > >

>

> > >

>

> > > > > >

>

> > >

>

> > > > > >

>

> > >

>

> > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > >

[Guest guest]

No. I live in Philadelphia.

On Oct 18, 2007, at 8:03 PM, rbarna dejazzd.com wrote:

>

> I have CREST scleroderma, which is now called Limited Scleroderma.

> I was diagnosed in 1997 and have been on the antibiotic therapy for

> about 5 years.

>

> Do you live near Dr. Whitman?

> Re: rheumatic Overdue introduction

> >

> > > >

> >

> > > > >

> >

> > > >

> >

> > > > > Hi, folks,

> >

> > > >

> >

> > > > > Did anyone see Dr. HH Whitman in NJ? He uses the AP, and I

> thought

> >

> > > >

> >

> > > > > I might see him. Would like to get people's experiences

> with him.

> >

> > > >

> >

> > > > > Thanks,

> >

> > > >

> >

> > > > >

> >

> > > >

> >

> > > > > On Oct 17, 2007, at 9:05 PM, lynneandsantos wrote:

> >

> > > >

> >

> > > > >

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > Hi ,YES, lyne is probably what brought on your

> >

> > > scleroderma.My

> >

> > > >

> >

> > > > > > doctor suspected that it had brought mine on also but

> tests came

> >

> > > >

> >

> > > > > back

> >

> > > >

> >

> > > > > > negative and now we know that the cause was celiac

> disease.I am

> >

> > > >

> >

> > > > > now in

> >

> > > >

> >

> > > > > > full remission by using antibiotics and diflucan. Lynne

> G./SD

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > tickmeister1 wrote:

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > Just wanted to say hello to all here. I've been lurking

> on and

> >

> > > >

> >

> > > > > > off, but

> >

> > > >

> >

> > > > > > > since I replied to a post finally thought I should at

> least

> >

> > > >

> >

> > > > > identify

> >

> > > >

> >

> > > > > > > myself. I'm a 38 yr old woman with Lyme disease, severe

> >

> > > >

> >

> > > > > > arthritis, an a

> >

> > > >

> >

> > > > > > > rare autoimmune illness called CREST Syndrome. Except

> some of

> >

> > > >

> >

> > > > > my drs

> >

> > > >

> >

> > > > > > > debate that the autoimmune illness isn't the real deal and

> >

> > > think

> >

> > > >

> >

> > > > > > it was

> >

> > > >

> >

> > > > > > > brought on my the Lyme. I have been on antibiotics for

> 2.5 yrs

> >

> > > >

> >

> > > > > > for the

> >

> > > >

> >

> > > > > > > Lyme. I had it 16 yrs before I could get a diagnosis

> despite

> >

> > > >

> >

> > > > > > approx 18

> >

> > > >

> >

> > > > > > > tick bites and several rashes! I have also had Bartonella

> >

> > > which

> >

> > > >

> >

> > > > > > > finally got rid of I think and also mycoplasm infections.

> >

> > > Its been

> >

> > > >

> >

> > > > > > > interesting to see some symptoms I had for years go

> away with

> >

> > > >

> >

> > > > > > long-term

> >

> > > >

> >

> > > > > > > antibiotic treatment.

> >

> > > >

> >

> > > > > > >

> >

> > > >

> >

> > > > > > > I'm currently on the Schardt protocol for Lyme using

> Diflucan

> >

> > > >

> >

> > > > > 200mg

> >

> > > >

> >

> > > > > > > daily for 50 days then alternating 50 days with an

> antibiotic

> >

> > > >

> >

> > > > > which

> >

> > > >

> >

> > > > > > > currently is Minocin. Schardt suggests alternating with a

> >

> > > >

> >

> > > > > penicillin

> >

> > > >

> >

> > > > > > > abx, but I am allergic to those. Minocin is also

> >

> > > experimentally

> >

> > > >

> >

> > > > > > used to

> >

> > > >

> >

> > > > > > > treat CREST plus I have severe CNS issues so the dr felt

> >

> > > >

> >

> > > > > Minocin was

> >

> > > >

> >

> > > > > > > the logical choice with its anti-inflammatory

> properties and

> >

> > > >

> >

> > > > > > ability to

> >

> > > >

> >

> > > > > > > cross the blood-brain barrier.

> >

> > > >

> >

> > > > > > >

> >

> > > >

> >

> > > > > > > Is there anyone here with similar illness? Any doctors

> here

> >

> > > who

> >

> > > >

> >

> > > > > have

> >

> > > >

> >

> > > > > > > suggestions or comments on my treatment?

> >

> > > >

> >

> > > > > > >

> >

> > > >

> >

> > > > > > >

> >

> > > >

> >

> > > > > > >

> >

> > > >

> >

> > > > > > >

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > >

[Guest guest]

,

I live in PA, about an hour outside of Philadelphia. I don't know what side of

Phila. you live on, but it only took me about an hour and a half to an hour and

45 minutes to get to Dr. Whitman's. It wasn't an unreasonable drive.

Roni

Re: rheumatic Overdue introduction

>

> > >

>

> > > > >

>

> > >

>

> > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > Hi, folks,

>

> > >

>

> > > > >

>

> > >

>

> > > > > > Did anyone see Dr. HH Whitman in NJ? He uses the AP, and I

>

> > thought

>

> > >

>

> > > > >

>

> > >

>

> > > > > > I might see him. Would like to get people's experiences

>

> > with him.

>

> > >

>

> > > > >

>

> > >

>

> > > > > > Thanks,

>

> > >

>

> > > > >

>

> > >

>

> > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > On Oct 17, 2007, at 9:05 PM, lynneandsantos wrote:

>

> > >

>

> > > > >

>

> > >

>

> > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > Hi ,YES, lyne is probably what brought on your

>

> > >

>

> > > > scleroderma.My

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > doctor suspected that it had brought mine on also but

>

> > tests came

>

> > >

>

> > > > >

>

> > >

>

> > > > > > back

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > negative and now we know that the cause was celiac

>

> > disease.I am

>

> > >

>

> > > > >

>

> > >

>

> > > > > > now in

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > full remission by using antibiotics and diflucan. Lynne

>

> > G./SD

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > tickmeister1 wrote:

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > Just wanted to say hello to all here. I've been lurking

>

> > on and

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > off, but

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > since I replied to a post finally thought I should at

>

> > least

>

> > >

>

> > > > >

>

> > >

>

> > > > > > identify

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > myself. I'm a 38 yr old woman with Lyme disease, severe

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > arthritis, an a

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > rare autoimmune illness called CREST Syndrome. Except

>

> > some of

>

> > >

>

> > > > >

>

> > >

>

> > > > > > my drs

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > debate that the autoimmune illness isn't the real deal and

>

> > >

>

> > > > think

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > it was

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > brought on my the Lyme. I have been on antibiotics for

>

> > 2.5 yrs

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > for the

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > Lyme. I had it 16 yrs before I could get a diagnosis

>

> > despite

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > approx 18

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > tick bites and several rashes! I have also had Bartonella

>

> > >

>

> > > > which

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > finally got rid of I think and also mycoplasm infections.

>

> > >

>

> > > > Its been

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > interesting to see some symptoms I had for years go

>

> > away with

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > long-term

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > antibiotic treatment.

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > I'm currently on the Schardt protocol for Lyme using

>

> > Diflucan

>

> > >

>

> > > > >

>

> > >

>

> > > > > > 200mg

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > daily for 50 days then alternating 50 days with an

>

> > antibiotic

>

> > >

>

> > > > >

>

> > >

>

> > > > > > which

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > currently is Minocin. Schardt suggests alternating with a

>

> > >

>

> > > > >

>

> > >

>

> > > > > > penicillin

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > abx, but I am allergic to those. Minocin is also

>

> > >

>

> > > > experimentally

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > used to

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > treat CREST plus I have severe CNS issues so the dr felt

>

> > >

>

> > > > >

>

> > >

>

> > > > > > Minocin was

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > the logical choice with its anti-inflammatory

>

> > properties and

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > ability to

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > cross the blood-brain barrier.

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > Is there anyone here with similar illness? Any doctors

>

> > here

>

> > >

>

> > > > who

>

> > >

>

> > > > >

>

> > >

>

> > > > > > have

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > suggestions or comments on my treatment?

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

[Guest guest]

I live in the northwest. What route would you recommend? It would

be such a relief it it took only an hour and 45 minutes since i hurt

a lot in the car.

On Oct 18, 2007, at 8:55 PM, rbarna dejazzd.com wrote:

> ,

>

> I live in PA, about an hour outside of Philadelphia. I don't know

> what side of Phila. you live on, but it only took me about an hour

> and a half to an hour and 45 minutes to get to Dr. Whitman's. It

> wasn't an unreasonable drive.

> Roni

>

> Re: rheumatic Overdue introduction

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > >

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > Hi, folks,

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > Did anyone see Dr. HH Whitman in NJ? He uses the AP, and I

> >

> > > thought

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > I might see him. Would like to get people's experiences

> >

> > > with him.

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > Thanks,

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > >

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > On Oct 17, 2007, at 9:05 PM, lynneandsantos wrote:

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > >

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > >

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > Hi ,YES, lyne is probably what brought on your

> >

> > > >

> >

> > > > > scleroderma.My

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > doctor suspected that it had brought mine on also but

> >

> > > tests came

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > back

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > negative and now we know that the cause was celiac

> >

> > > disease.I am

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > now in

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > full remission by using antibiotics and diflucan. Lynne

> >

> > > G./SD

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > >

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > tickmeister1 wrote:

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > >

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > > Just wanted to say hello to all here. I've been

> lurking

> >

> > > on and

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > off, but

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > > since I replied to a post finally thought I should at

> >

> > > least

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > identify

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > > myself. I'm a 38 yr old woman with Lyme disease,

> severe

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > arthritis, an a

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > > rare autoimmune illness called CREST Syndrome. Except

> >

> > > some of

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > my drs

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > > debate that the autoimmune illness isn't the real

> deal and

> >

> > > >

> >

> > > > > think

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > it was

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > > brought on my the Lyme. I have been on antibiotics for

> >

> > > 2.5 yrs

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > for the

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > > Lyme. I had it 16 yrs before I could get a diagnosis

> >

> > > despite

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > approx 18

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > > tick bites and several rashes! I have also had

> Bartonella

> >

> > > >

> >

> > > > > which

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > > finally got rid of I think and also mycoplasm

> infections.

> >

> > > >

> >

> > > > > Its been

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > > interesting to see some symptoms I had for years go

> >

> > > away with

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > long-term

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > > antibiotic treatment.

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > >

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > > I'm currently on the Schardt protocol for Lyme using

> >

> > > Diflucan

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > 200mg

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > > daily for 50 days then alternating 50 days with an

> >

> > > antibiotic

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > which

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > > currently is Minocin. Schardt suggests alternating

> with a

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > penicillin

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > > abx, but I am allergic to those. Minocin is also

> >

> > > >

> >

> > > > > experimentally

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > used to

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > > treat CREST plus I have severe CNS issues so the dr

> felt

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > Minocin was

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > > the logical choice with its anti-inflammatory

> >

> > > properties and

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > ability to

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > > cross the blood-brain barrier.

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > >

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > > Is there anyone here with similar illness? Any doctors

> >

> > > here

> >

> > > >

> >

> > > > > who

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > have

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > > suggestions or comments on my treatment?

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > >

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > >

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > >

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > > >

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > >

> >

> > > >

> >

> > > > > >

> >

> > > >

> >

> > > > > > > >

[Guest guest]

,

I would suggest you look at Driving Directions, type in Dr. Whitman's

address, if you need it, let me know and then type in your address. I have

found driving directions to be more reliable than the others.

got me directly to Dr. Whitman's door.

I took 309N and then got on 78 outside of town. You obviously would need to

do a different route.

Roni

Re: rheumatic Overdue introduction

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > Hi, folks,

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > Did anyone see Dr. HH Whitman in NJ? He uses the AP, and I

>

> > >

>

> > > > thought

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > I might see him. Would like to get people's experiences

>

> > >

>

> > > > with him.

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > Thanks,

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > On Oct 17, 2007, at 9:05 PM, lynneandsantos wrote:

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > Hi ,YES, lyne is probably what brought on your

>

> > >

>

> > > > >

>

> > >

>

> > > > > > scleroderma.My

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > doctor suspected that it had brought mine on also but

>

> > >

>

> > > > tests came

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > back

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > negative and now we know that the cause was celiac

>

> > >

>

> > > > disease.I am

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > now in

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > full remission by using antibiotics and diflucan. Lynne

>

> > >

>

> > > > G./SD

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > tickmeister1 wrote:

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > > Just wanted to say hello to all here. I've been

>

> > lurking

>

> > >

>

> > > > on and

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > off, but

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > > since I replied to a post finally thought I should at

>

> > >

>

> > > > least

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > identify

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > > myself. I'm a 38 yr old woman with Lyme disease,

>

> > severe

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > arthritis, an a

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > > rare autoimmune illness called CREST Syndrome. Except

>

> > >

>

> > > > some of

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > my drs

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > > debate that the autoimmune illness isn't the real

>

> > deal and

>

> > >

>

> > > > >

>

> > >

>

> > > > > > think

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > it was

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > > brought on my the Lyme. I have been on antibiotics for

>

> > >

>

> > > > 2.5 yrs

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > for the

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > > Lyme. I had it 16 yrs before I could get a diagnosis

>

> > >

>

> > > > despite

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > approx 18

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > > tick bites and several rashes! I have also had

>

> > Bartonella

>

> > >

>

> > > > >

>

> > >

>

> > > > > > which

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > > finally got rid of I think and also mycoplasm

>

> > infections.

>

> > >

>

> > > > >

>

> > >

>

> > > > > > Its been

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > > interesting to see some symptoms I had for years go

>

> > >

>

> > > > away with

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > long-term

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > > antibiotic treatment.

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > > I'm currently on the Schardt protocol for Lyme using

>

> > >

>

> > > > Diflucan

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > 200mg

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > > daily for 50 days then alternating 50 days with an

>

> > >

>

> > > > antibiotic

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > which

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > > currently is Minocin. Schardt suggests alternating

>

> > with a

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > penicillin

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > > abx, but I am allergic to those. Minocin is also

>

> > >

>

> > > > >

>

> > >

>

> > > > > > experimentally

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > used to

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > > treat CREST plus I have severe CNS issues so the dr

>

> > felt

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > Minocin was

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > > the logical choice with its anti-inflammatory

>

> > >

>

> > > > properties and

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > ability to

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > > cross the blood-brain barrier.

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > > Is there anyone here with similar illness? Any doctors

>

> > >

>

> > > > here

>

> > >

>

> > > > >

>

> > >

>

> > > > > > who

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > have

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > > suggestions or comments on my treatment?

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > >

>

> > >

>

> > > > >

>

> > >

>

> > > > > > > > >

[Guest guest]

Hi Debbie,

I thought CREST had a different antibody pattern than Scleroderma?

I exhibit mostly the Calcinosis & Raynauds with minor Sclerotacdyl

and Telengiectasia. The tops of my hands look very shiny like

plastic sometimes and I suspect that is the Scleroderma. It seems to

get worse if I let my hands get dry and not use lotion.

The calcinosis is the worst part because it is painful. I have had

the stuff excised from my elbows twice. But I get tiny bumps on my

arms and scalp which emit a white paste which I read online is also

part of the calcinosis. The Raynauds comes and goes in severity. It

does help the Raynauds that I am on Dilitiazem now for a heart valve

problem because it is also used off-label for Raynauds.

A cardiologist said the reason my joints hurt is because of the

CREST. He said he had seen it before; however I have never had any

other dr who had CREST patients. Well my rheumotologist might have,

but he would not talk to me about it. He said you gotta learn to

deal with it and sent me out the door.

> >

> > , HI...I have Scleroderma, specifically Crest type as

> well...and have RA and have a lung condition from the SD...I am

doing

> well, and did well on the minocin for the Crest...not on it any

more

> but did well..

> > Debbie

>

>

>

>

>

>

[Guest guest]

Can you tell me what the echo test is? I don't know if I have had

it. I had several tests run by cardiologists. I read up on the pulm

hypertension and I am already taking the med for my heart that is

used for PH. I do recall a different cardio 3 years ago writing I

had mildly elevated pulmonary pressures, but yet verbally he said

nothing was wrong with me. I showed my records from him to my endo

and she said the elevated pressure was probably from living at high

elevation. It was a 2nd cardio that caught a heart valve defect even

though 5 other drs had said they heard a murmur. During my first

ultrasound he discovered it and went into great detail about what

was going on, put me on Dilitizem for it then later denied that he

had found anything wrong with my heart. Doctors are just plain

weird in this town.

I can't tell you how many have denied things were wrong after

telling me verbally what was wrong. I even had one doctor deny that

she had ever seen me! And I had two check receipts from where I paid

her, so it really made her mad when I could prove I had been there.

I don't know if it is some game they play with insurance or what the

deal is.

> > >

> > > , HI...I have Scleroderma, specifically Crest type as

> > well...and have RA and have a lung condition from the SD...I

am

> doing

> > well, and did well on the minocin for the Crest...not on it

any

> more

> > but did well..

> > > Debbie

> >

> >

> >

> >

> >

> >

[Guest guest]

Well I'm taking Diltiazem which is the generic for Cardizem. I was

given it for a heart murmur which the cardio said was made worse by a

high heartrate. So its to slow my heartrate in order to make the

defective valve work better. But it also helps with Raynauds. I

tried to read a little the other night about PH and that's when I

discovered diltiazem is sometimes given for PH.

> > > >

> > > > , HI...I have Scleroderma, specifically Crest type as

> > > well...and have RA and have a lung condition from the SD...I

> am

> > doing

> > > well, and did well on the minocin for the Crest...not on it

> any

> > more

> > > but did well..

> > > > Debbie

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

> > >

> > > , HI...I have Scleroderma, specifically Crest type as

> > well...and have RA and have a lung condition from the SD...I am

> doing

> > well, and did well on the minocin for the Crest...not on it any

> more

> > but did well..

> > > Debbie

> >

> > I am new member and just want to know why you no longer take the

> > minocycline.I take it and seem to be getting better.paul

> >

> >

> >

[Guest guest]

I thought systemic was the one that attacked the organs and entire

body? How did you reverse it?

>

> Hi ;

> Crest is scleroderma but it usually attacks the internal

organs

> faster than systemic SD.The only type of SD that does not affect

the

> skin until much later is Scleroderma sine derma ,it gets the

> muscles,tendons and internal organs and after a decade or so gets

to the

> skin.I have systemic SD but reversed it before it did any internal

> damage.Skin it now totally normal after the first 5 years on AP,it

had

> been very tight and shiny.I was beginning to look like a store

manequine

>

>

>

>\

[Guest guest]

Why do you say that with such conviction? There's no concise info

even from the Mayo Clinic on how much Crest or SD will affect any

given person because little is understood about the disease. I know

that a number of my relatives probably had it knowing what I know

now how Crest affects the look of the skin. But all of those

relatives lived to very old ages and died of non-autoimmune related

things.

I don't see how anyone here can claim to be such an expert on

autoimmune illnesses when even the most reknown rheumatologists and

immunologists are still baffled by these illnesses.

> > >

> > > Hi ;

> > > Crest is scleroderma but it usually attacks the internal

> > organs

> > > faster than systemic SD.The only type of SD that does not

affect

> > the

> > > skin until much later is Scleroderma sine derma ,it gets the

> > > muscles,tendons and internal organs and after a decade or so

gets

> > to the

> > > skin.I have systemic SD but reversed it before it did any

internal

> > > damage.Skin it now totally normal after the first 5 years on

AP,it

> > had

> > > been very tight and shiny.I was beginning to look like a store

> > manequine

> > >

> > >

> > >

> > >\

> >

> >

>

>

>

>

>

[Guest guest]

Thanks Debbie. Yes that is what I was referring too that it's

impossible to make blanket statements of how someone's illness is

going to progress or if it will at all. It reminds me of one of my

dr's who is not technically part of my team of dr treating the Lyme,

Crest, arthritis, but only an OB/GYN who treats my hypothyroid and

insists that I am " dying " as she puts it. Ok, I'm showing lots of

progress with the antibiotic treatment, more physically active than

have been in years and still able to work. Yet she tried to insist

because she has patients who have Lupus that she knows something

about Crest. She has no patients with Crest and cannot even say what

each letter stands for.

Which brings up another topic... has anyone ever had a doctor try to

FORCE disability? Usually its the other way around. Instead I have

this Ob/Gyn trying to force me into disability even though I rarely

miss a day of work and if I do its because of asthma related to

smoke from controlled burns in the area. I admit I usually feel

worse when my ANA is low instead of high. However, it made my dr

look like a fool trying to insist on disability when my latest ANA

test was negative.

> > > >

> > > > Hi ;

> > > > Crest is scleroderma but it usually attacks the internal

> > > organs

> > > > faster than systemic SD.The only type of SD that does not

> affect

> > > the

> > > > skin until much later is Scleroderma sine derma ,it gets

the

> > > > muscles,tendons and internal organs and after a decade or

so

> gets

> > > to the

> > > > skin.I have systemic SD but reversed it before it did any

> internal

> > > > damage.Skin it now totally normal after the first 5 years

on

> AP,it

> > > had

> > > > been very tight and shiny.I was beginning to look like a

store

> > > manequine

> > > >

> > > >

> > > >

> > > >\

> > >

> > >

> >

> >

> >

> >

> >

[Guest guest]

,

Your large brood is beautiful!

Alana

[Guest guest]

Hi !

Welcome back! Sorry to hear of your loss....We are glad your back! I *do*

remember you, but didnt realise u unsubbed from the list...

 

Question:

That's a ton of kids are you the sole care provider?

phew!

Jodi & Juni

Digital Scrapbook Artist & Service Dog

All Scraps 4 You

www.freewebs.com/allscraps4you

From: <monicathemighty@...>

Subject: Overdue Introduction

" " < >

Date: Monday, December 8, 2008, 9:46 PM

Since I just replied to a post, it's probably time for me to introduce

myself as well.

My name is English. I live in Utah and was originally a member of

this group a looooong time ago. Probably 6 or so years ago. At that point

I had three children, the youngest of whom had SMA type 1. My Taleah

passed away two days before she turned four and I unsubbed from the list.

Since then I gave birth to two beautiful boys who have an extremely rare

asymptomatic form of SMA, adopted two children from Zambia and then gave

birth to my youngest who has SMA type 1. So if you're counting that is 8

total children, 7 living with me.

Tabitha was very weak early on, symptomatic by day 4, g-tube for swallowing

difficulties at 5 weeks old. She is in one of the research trials and is on

a couple different medications to decrease progression and weakness. She's

done amazingly well since then. Rather than just prevent loss of strength,

she has actually regained some of her swallow, arm strength, and vocal

volume. In the scans they've done she has increased lean muscle mass and

nerve function.

She's a wonderful, beautiful, vibrant 14 month old little girl.

You can check out my blog if you want far more info. about our little family

than you ever asked for:

www.monicathemighty .blogspot. com

Tabs just had a hospital stay for bleeding in her stomach, that resolved,

but left us with many unanswered questions.

Glad to be here, I love it here. Even if I don't feel like I have a ton to

contribute, I read and am reassured of the kind of child/adolescent/ adult

Tabitha might grow up to be.

[Guest guest]

LOL - well, me and my husband.

On Mon, Dec 8, 2008 at 10:23 PM, Jodi & Juni

<junikins4me@...>wrote:

> Hi !

> Welcome back! Sorry to hear of your loss....We are glad your back! I *do*

> remember you, but didnt realise u unsubbed from the list...

>

> Question:

> That's a ton of kids are you the sole care provider?

> phew!

>

> Jodi & Juni

> Digital Scrapbook Artist & Service Dog

> All Scraps 4 You

> www.freewebs.com/allscraps4you

>

>

>

> From: <monicathemighty@... <monicathemighty%40gmail.com>>

> Subject: Overdue Introduction

> " " < <%40>

> >

> Date: Monday, December 8, 2008, 9:46 PM

>

>

> Since I just replied to a post, it's probably time for me to introduce

> myself as well.

>

> My name is English. I live in Utah and was originally a member of

> this group a looooong time ago. Probably 6 or so years ago. At that point

> I had three children, the youngest of whom had SMA type 1. My Taleah

> passed away two days before she turned four and I unsubbed from the list.

>

> Since then I gave birth to two beautiful boys who have an extremely rare

> asymptomatic form of SMA, adopted two children from Zambia and then gave

> birth to my youngest who has SMA type 1. So if you're counting that is 8

> total children, 7 living with me.

>

> Tabitha was very weak early on, symptomatic by day 4, g-tube for swallowing

> difficulties at 5 weeks old. She is in one of the research trials and is on

> a couple different medications to decrease progression and weakness. She's

> done amazingly well since then. Rather than just prevent loss of strength,

> she has actually regained some of her swallow, arm strength, and vocal

> volume. In the scans they've done she has increased lean muscle mass and

> nerve function.

>

> She's a wonderful, beautiful, vibrant 14 month old little girl.

>

> You can check out my blog if you want far more info. about our little

> family

> than you ever asked for:

>

> www.monicathemighty .blogspot. com

>

> Tabs just had a hospital stay for bleeding in her stomach, that resolved,

> but left us with many unanswered questions.

>

> Glad to be here, I love it here. Even if I don't feel like I have a ton to

> contribute, I read and am reassured of the kind of child/adolescent/ adult

> Tabitha might grow up to be.

>

>

>

>