Hi, I'm new & I have Limited Systemic Scleroderma

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Postby Melinda » Tue Jan 26, 2010 2:40 am

Hello Everyone,

My name is Melinda & I'm new here.  I'm a 49 y/o mom and I was diagnosed with Limited Systemic Scleroderma 2 yrs ago.  I have been reading posts here on the board for the last few months and I just finished Henry Scammell's Scleroderma book and I'm looking forward to getting onto AP asap.  I've found so many of your experiences very inspiring and I'm so hopeful that it will help me, too.

I discovered AP in a funny way.  The short version of the story is that I had a badly cracked molar that abscessed.  The dentist put me on Clindamycin for 20 days and pulled the tooth, but the infection came back a few days after the meds ran out.  So the dentist prescribed a 2nd course of the same med/same dose again for 20 days and finally the infection was cured.  While I was on the 1st course, I noticed that I had less sclero. body pain, stiffness & fatigue, but I didn't say anything to anyone.  I just kind of shrugged it off.   When the 1st course ended, the pain & all came back.  Then when I started the 2nd course, things improved again.  This time my husband noticed and commented that I seemed to have less pain, more energy & that I was gardening again & more active.  A few weeks later, while talking with a Scleroderma support person, I happened to mention the "odd" thing we'd noticed and this person told me about AP & The Road Back Foundation.  I'd never heard of AP or RB before, but I started my research and here I am today.  Since we know that the Clindamycin made a difference before (and enough to make us even think to mention the whole tooth thing to the Sclero person in that conversation), we are so hopeful that AP will give me back some of what I've lost in the last couple of years.  We live in SW Wash. state so if anyone knows of a great AP provider in Portland or Seattle I'd really appreciate your advice via PM.  I've had a lot of progression the last few months and I have to admit that it has me a bit scared.  Thank you for sharing your experiences on this site, you've give me & I'm sure many others, a lot of hope.
50 y/o with Ltd SSD since mid-late '07. Now FM dx-ed 12/10, also. Raynaud's, anemia, Vit D deficient.
Began AP late 3/10. 100mg Mino 2x daily, every other day. Plus, 300 mg oral clindy twice every day added 12/10. Prilosec, Probiotic, Multi-Vit w/iron, Vit. D&E, Fish Oil, additional iron supplement.
Plaquenil dc-ed b/c of vision problems '08.
Melinda
 
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Postby Cheryl F » Tue Jan 26, 2010 2:51 am

Welcome, we're are glad you  found us, even if you had to crack a tooth to get here.  In the long run, I'll bet that you will be ever so thankful for that cracked tooth one day.

There are many here that are on their road back from scleroderma.  You may have read my daugther's testimonial, she too has Limited Systemic Scleroderma.  Here is a link to an article that ran in last falls edition of the Scleroderma Foundation Magazine, "Scleroderma Voice".

http://www.scleroderma.org/pdf/News/2009/swimming9-09.pdf

Like the stories in the book, there are lots of sclero patients here getting better.

Welcome!

Cheryl Ferguson
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Postby Melinda » Tue Jan 26, 2010 3:04 am

Thank you so much, Cheryl.  I have read your daughter's story, and as the mom of 3 kids (the oldest of whom is 17), I had tears in my eyes as I read it.  As much as I hate having this disorder, the thought of one of my kids getting something serious is a mom's worst nightmare.  I am so very happy for all of you!!  Thank you for sharing her story.   Please give your daughter a hug for me.  BTW, we lived in Roseville, CA for many years.  I've often wondered if 10 yrs of living just blocks from the 2nd worst semiconductor polluter (as per US News at the time), had anything to do with this.  Who knows?

You're right about me being thankful for that bad tooth!  As I've read about AP I've thought of that many times.   I truly believe that was a huge blessing (as well as the wonderful person that told me about AP)!!  I'd never lost a tooth, but was a very small price to pay for a chance to be able to do the things with my kids that I once did.   Now, to find the right provider and get started.  :)
50 y/o with Ltd SSD since mid-late '07. Now FM dx-ed 12/10, also. Raynaud's, anemia, Vit D deficient.
Began AP late 3/10. 100mg Mino 2x daily, every other day. Plus, 300 mg oral clindy twice every day added 12/10. Prilosec, Probiotic, Multi-Vit w/iron, Vit. D&E, Fish Oil, additional iron supplement.
Plaquenil dc-ed b/c of vision problems '08.
Melinda
 
Posts: 55
Joined: Sat Jan 23, 2010 2:48 am
Location: Southwest Washington State USA

Postby Cheryl F » Tue Jan 26, 2010 3:08 am

OMG, What Semiconductor plant?  We moved to Loomis in 2001, but Jess was born and raised in Roseville, me too, I went to Oakmont HS.  Did you grow up here or live here later when your kids were younger?  I am 49 also, Jess is now 20, and I have a 15 year old daughter too.

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Postby Cheryl F » Tue Jan 26, 2010 3:11 am

[user=2005]Melinda[/user] wrote:
 Now, to find the right provider and get started.  :)


There is a woman I know with Scleroderma down in Texas, her Rheumy is vocally opposed to AP, she gets her AP RX from her dentist, no kidding, maybe you can talk your dentist into a longer run of clindy.  Just to keep going on the improvement until you can arrange for a physician to prescribe.

Good Luck!

Cheryl
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Postby Melinda » Tue Jan 26, 2010 3:15 am

NEC Corporation.  We lived in Roseville from 1989 to 1999, but we moved there from Silicon Valley where I went to school, lived & worked near other semiconductor plants that are EPA Superfund sites now.  I'll never know if it had anything to do with all of this, but reading your reply gave me chills.
50 y/o with Ltd SSD since mid-late '07. Now FM dx-ed 12/10, also. Raynaud's, anemia, Vit D deficient.
Began AP late 3/10. 100mg Mino 2x daily, every other day. Plus, 300 mg oral clindy twice every day added 12/10. Prilosec, Probiotic, Multi-Vit w/iron, Vit. D&E, Fish Oil, additional iron supplement.
Plaquenil dc-ed b/c of vision problems '08.
Melinda
 
Posts: 55
Joined: Sat Jan 23, 2010 2:48 am
Location: Southwest Washington State USA

Postby Cheryl F » Tue Jan 26, 2010 3:22 am

So does simiconductor pollution include silica emissions?  Silica exposure has been linked to scleroderma.  I don't know anything about simiconductors or microchips.  We lived in the middle of Roseville, not that close to NEC, we lived near Cirby and Vernon if you remember where that is, near I-80.  We weren't that close to NEC.

If it turns out that some exposure was a contributor to your illness onset, you may want to look into what others are doing to detox their bodies. 

Tomorrow, when the east coasters are up, more people will chime in to share their experiences. 

Cheryl
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Postby Melinda » Tue Jan 26, 2010 3:24 am

[user=2]Cheryl F[/user] wrote:
[user=2005]Melinda[/user] wrote:
 Now, to find the right provider and get started.  :)


There is a woman I know with Scleroderma down in Texas, her Rheumy is vocally opposed to AP, she gets her AP RX from her dentist, no kidding, maybe you can talk your dentist into a longer run of clindy.  Just to keep going on the improvement until you can arrange for a physician to prescribe.

Good Luck!

Cheryl

Thanks for the suggestion.  I've been off of the clindy for awhile now (hence all of the progression, I think) and my local PCP said that he'd be willing to oversee AP, but only if my rheumy approves.  Unfortunately, the PCP is moving out of the area this month & my rheumy is at Stanford Univ. (I fly down 2-3x a year, the rheumy here at the start was pretty awful) and I don't see him (rheumy) again until next month.  I'm really hoping to find someone that is AP savvy already if I can, so that I can give this the very best chance of success.  I've even thought of flying to see Dr. T. as you & Jess did, but that's a long way and the thought is somewhat daunting.  Since you've been through this already, do you recommend making the trip?  If it makes that big of a difference in the outcome, then I may well do it.  I really appreciate your advice.
50 y/o with Ltd SSD since mid-late '07. Now FM dx-ed 12/10, also. Raynaud's, anemia, Vit D deficient.
Began AP late 3/10. 100mg Mino 2x daily, every other day. Plus, 300 mg oral clindy twice every day added 12/10. Prilosec, Probiotic, Multi-Vit w/iron, Vit. D&E, Fish Oil, additional iron supplement.
Plaquenil dc-ed b/c of vision problems '08.
Melinda
 
Posts: 55
Joined: Sat Jan 23, 2010 2:48 am
Location: Southwest Washington State USA

Postby Melinda » Tue Jan 26, 2010 3:44 am

[user=2]Cheryl F[/user] wrote:
So does simiconductor pollution include silica emissions?  Silica exposure has been linked to scleroderma.  I don't know anything about simiconductors or microchips.  We lived in the middle of Roseville, not that close to NEC, we lived near Cirby and Vernon if you remember where that is, near I-80.  We weren't that close to NEC.

If it turns out that some exposure was a contributor to your illness onset, you may want to look into what others are doing to detox their bodies. 

Tomorrow, when the east coasters are up, more people will chime in to share their experiences. 

Cheryl


Good question, it's been 10 years since I had the EPA list in front of me and I'm not sure where I have it packed now.  My husband works in that industry (though not in or near a wafer fab (semiconductor production facility) anymore and he never worked for NEC.  He did work in wafer fabs though many years ago and he said that he doesn't know about silica, but they generally have pretty much every known toxic chemical known to man, including: antimony, boron, arsenic, TCE, acetone, sulfuric acid, hydrochloric acid, acetic acid, hydrofluoric acid...the list goes on.  (I hope I spelled those right. )  I remember the article saying that the number of employees that worked there with cancer, miscarriages, etc. were really frightening.  We moved from the area not long after reading the article and doing the research.  With 2 small kids and a 3rd on the way at the time (and I'd had pre-term labor with all 3 pregnancies), we weren't willing to risk any more exposure for the kids.  Although I have no idea if chemical exposure had anything to do with this, I've just wondered.  Thanks for suggesting the detox, people come into contact with chemicals a lot, so I'll look into that!

BTW, I remember Cirby & Vernon well.  We lived off Foothills near Woodcreek Oaks (if I recall the 2nd street name correctly).  Small world, isn't it? 
50 y/o with Ltd SSD since mid-late '07. Now FM dx-ed 12/10, also. Raynaud's, anemia, Vit D deficient.
Began AP late 3/10. 100mg Mino 2x daily, every other day. Plus, 300 mg oral clindy twice every day added 12/10. Prilosec, Probiotic, Multi-Vit w/iron, Vit. D&E, Fish Oil, additional iron supplement.
Plaquenil dc-ed b/c of vision problems '08.
Melinda
 
Posts: 55
Joined: Sat Jan 23, 2010 2:48 am
Location: Southwest Washington State USA

Postby Kim » Tue Jan 26, 2010 6:54 am

Hi Melinda, and welcome to the Roadback forum.

I also have Scleroderma as well as Lyme (which actually caused my Scleroderma) and am in remission today thanks to AP.  My story is in the Testimonials too.  This protocol is extremely effective for SD, as you've already experienced with your brief use of Clindy.

I'll be happy to send you the doctor's info in a PM (top right of the page).

Take care....kim
SD, RA, MCTD, Hashimoto's, Osteoporosis, Sjogren's, Uveitis, Lyme dx 9/08, AP 8/05-3/08, MP 3/08-8/08, AP/Lyme protocol 9/08, 9/09-REMISSION.
~ whatever it takes ~ http://www.roadback.org/index.cfm/fuseaction/community.display/display_id/502.html
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