newbie introduction

[Steve201]

Hi….my name is Steve201….steve for short….I live in Everett, wa. and was Dx'd with SD 10 yrs ago…

Doc's didn't expect me to live 6 mos…I started treatment after going to my original doc that couldn't read a blood test…he screwed around for 8 weeks and by then I'd gotten so bad that I couldn't work…so after an argument with the idiot doc, I demanded to see a specialist…which took one look at me ..did a number of tests including lung biopsies…..every part was checked…tested….inspected…and analysed…..if they could get to it ..somebody checked it out…not one part was left to the imagination…

the main doc…then put me on cytoxan/zofran/minocycline/predinisone…and a host of other pills…changed diet…went to pt…..psychological sessions….everything….10 yrs now and I'm still vertical and doing well….

unfortunately the prednisone did a number on my panchreas and I'm now a diabetic…but my latest a1c was promising …6.1ppm………

for those that feel like you can't beat this disease….I'm here to tell you that this is wrong thinking….it can be beaten…it can be defeated…..but it takes determination…excersize….teamwork…..and faith….

 

Steve

 

 

[Maz]

[user=2380]Steve201[/user] wrote:

the main doc…then put me on cytoxan/zofran/minocycline/predinisone…and a host of other pills…changed diet…went to pt…..psychological sessions….everything….10 yrs now and I'm still vertical and doing well…

for those that feel like you can't beat this disease….I'm here to tell you that this is wrong thinking….it can be beaten…it can be defeated…..but it takes determination…excersize….teamwork…..and faith….

Steve, how kind of you to check in with us and share your amazing story. What a journey you've had, but what inspirational courage, too! 🙂

I'm intrigued that your main doc put you on minocycline…were you just lucky and happened to find yourself in an AP doc's hands or did you have to seek him out after learning about AP?

Was there ever any opportunity for you to try IV clindamycin therapy or to try to wean from your other drugs, once you'd stabilized?

Great to meet you and thank you for posting and joining us here. No doubt you will provide much hope to the many newcomers who are just beginning their road back!

Peace, Maz

[Randy]

Wow!

A true SD celebrety is in our midst. GREAT to hear from you, Steve.  You have been my inspiration from the gitgo!

Welcome aboard, we do love you, and are very glad you're here.

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[Kim]

Hi Steve,

Welcome, and thanks for your post. 🙂

I too have survived the dreaded SD using your same basic philosophy……….it's not just one thing, and you've got to do the work.

You are obviously a smart guy that has sorted through some heavy issues, so you should feel optimistic about turning around the diabetes too. 😉

Take care…..kim

[Steve201]

[user=27]Maz[/user] wrote:

[user=2380]Steve201[/user] wrote:

the main doc…then put me on cytoxan/zofran/minocycline/predinisone…and a host of other pills…changed diet…went to pt…..psychological sessions….everything….10 yrs now and I'm still vertical and doing well…

for those that feel like you can't beat this disease….I'm here to tell you that this is wrong thinking….it can be beaten…it can be defeated…..but it takes determination…excersize….teamwork…..and faith….

Steve, how kind of you to check in with us and share your amazing story. What a journey you've had, but what inspirational courage, too! 🙂

I'm intrigued that your main doc put you on minocycline…were you just lucky and happened to find yourself in an AP doc's hands or did you have to seek him out after learning about AP?

Was there ever any opportunity for you to try IV clindamycin therapy or to try to wean from your other drugs, once you'd stabilized?

Great to meet you and thank you for posting and joining us here. No doubt you will provide much hope to the many newcomers who are just beginning their road back!

Peace, Maz

First off…

Maz, thanks for your kind words ….it was alot of hard work and I have to credit my wife marsha for all of the research….I was so sick I could barely look at a computer much less comprehend what was going on with me…I just knew I was in serious trouble but didn't know why until my doc and wife told me about SD.

when I got everything stabilized and started to reverse conditions..my doc started wheening me off of cytoxan….I then changed to tetracycline….as I noted ..marsha did the research and found this doc in boston I think…that suggested AP might be of some benefit…..My doc said he'd be willing to try anything that I wanted if it would work..I was too bad off to try clyndomyasin and had to go to the heavy drugs like cytoxan due to lung involvement…….about here I have to Credit my Doc with his willingness to allow me anything that would be of benefit….often we'd find something that was in a medical site or support site, and ask him about this or that…he'd tell us what he thought and give a yeah or neah depending on what benefit it would provide….some stuff we tried just flat out didn't work..or I became allergic to it….he was willing to try anything if he felt it would help……let me tell you it was hard….not something for a weak person ….we then started wheening me off of the other drugs….I'm now on a maintenance regiment….

Randy..thanks for the comment….we know each other from the other SD site….I've been very concerned with how you are doing and watching closely your progress…I'm glad I could help you out any way I could…..and really happy that your improving…God bless my friend….

 

Kim…thanks for the comments and happy to meet another survivor…it can be a really tough road to hoe…..nah..not that smart….marsha gets most of the credit…she did the research…..pushed me to do different things even deeeeeeeep tissue message….which hurt like hell…don't let anyone tell you it doesn't….

 

Steve

 

 

 

 

[JBJBJB]

Steve,

Even though I have not developed SD but a lot of my symptoms mimic SD. I went to Everett WA several times, a lot of woods and very pretty.

Recently I got diagnosed with Lyme disease. My Lyme disease doctor told me insulin resistance, thyroid problems, and protein S deficiency are part of Lyme disease package deal. I have to be very careful with my blood sugar. Right now my a1c is under 5.5% range.

Have you checked your thyroid? If not, perhaps you could ask your doctor for it. It is all about hormone imbalance and they are all related. Protein S deficiency is related to circulation, which gives me puffy swollen fingers and toes.

My merciful rheumy told me I had three years to live. It's been two years and I am feeling better!!!

JB

 

 

[Maz]

[user=2380]Steve201[/user] wrote:

Maz, thanks for your kind words ….it was alot of hard work and I have to credit my wife marsha for all of the research….I was so sick I could barely look at a computer much less comprehend what was going on with me…I just knew I was in serious trouble but didn't know why until my doc and wife told me about SD.

Steve, thanks so much for sharing the details with us! Marsha sounds like your earth angel and how fantastic you're just on a maintenance regimen now. WOW!

I am going to send you a PM (private message). To retrieve it, just click top right where it will say, “You have 1 new message.”

Thanks and regards to your dear wife! 🙂

Peace, Maz

[mkbeeliever]

[user=2380]Steve201[/user] wrote:

Hi….my name is Steve201….steve for short….I live in Everett, wa. and was Dx'd with SD 10 yrs ago…

Doc's didn't expect me to live 6 mos…I started treatment after going to my original doc that couldn't read a blood test…he screwed around for 8 weeks and by then I'd gotten so bad that I couldn't work…so after an argument with the idiot doc, I demanded to see a specialist…which took one look at me ..did a number of tests including lung biopsies…..every part was checked…tested….inspected…and analysed…..if they could get to it ..somebody checked it out…not one part was left to the imagination…

the main doc…then put me on cytoxan/zofran/minocycline/predinisone…and a host of other pills…changed diet…went to pt…..psychological sessions….everything….10 yrs now and I'm still vertical and doing well….

unfortunately the prednisone did a number on my panchreas and I'm now a diabetic…but my latest a1c was promising …6.1ppm………

for those that feel like you can't beat this disease….I'm here to tell you that this is wrong thinking….it can be beaten…it can be defeated…..but it takes determination…excersize….teamwork…..and faith….

 
Steve

 

Wow, what a story!  I will read this to my mom!  Nice to see you Steve…I follow you on the other board – I'm just a lurker more than a poster there.

I agree on all points to help defeat this disease…Determination (mom has plenty of that with a little help from me!), Exercise (she's now to the point where she is doing PT and OT), Teamwork (Yes!  This is so key!  You have to be a team with the doctors you have chosen to care for you and consult with you and the people who are advocating for your health care – in your case your wife and in our case that would be me.) and the most important in my opinion FAITH – (we are very faith filled and could not have gotten through this with out our church family, prayer, intercessory prayer and our beliefs.)  You have it all covered Steve!  God's most richest blessings on  you and yours!

P.S. mom said the other day….”I feel so great.  I don't feel sick at all.  It's like I'm normal!”  Amazing.  Thank you Lord.  We still have a ways to go but for that particular day and more days than not, she feels great!

Blessings,
Michelle

[Steve201]

[user=266]JBJBJB[/user] wrote:

Steve,

Even though I have not developed SD but a lot of my symptoms mimic SD. I went to Everett WA several times, a lot of woods and very pretty.

Recently I got diagnosed with Lyme disease. My Lyme disease doctor told me insulin resistance, thyroid problems, and protein S deficiency are part of Lyme disease package deal. I have to be very careful with my blood sugar. Right now my a1c is under 5.5% range.

Have you checked your thyroid? If not, perhaps you could ask your doctor for it. It is all about hormone imbalance and they are all related. Protein S deficiency is related to circulation, which gives me puffy swollen fingers and toes.

My merciful rheumy told me I had three years to live. It's been two years and I am feeling better!!!

JB

 

 

JB

next time your out this way…let me know…we can all meet up for dinner or something..

I'm sorry to hear about the lyme disease….hopefully that can be relieved…I've had everything in my body checked…if it wasn't checked…I didn't have it….or it wasn't in me….believe me…they checked everything…and then some….I often kid my Dr that he's gone where no man has gone before…and beyond..:roll-laugh:

really glad to hear your A1c is doing well…that's my goal this yr..get it down to mid 5's….

 

Hi Mkbeleever..

thanks for your comments …I am glad you follow..but it would be nice if you introduced and posted over there too….we're a happy group…:D

 

Steve

[JBJBJB]

Steve,

I honestly believe my thyroid and insulin problems were due to the prednisone intake. I have gained 30 plus pounds and now I am back down 35 pounds. My A1C is coming down as I am back to my normal weight.

Glad to hear your doc has checked everything comparing the first doc.

My brother in law works for Boeing in Everett, WA. That is the reason we go up there to visit him every three years. I will let you know if I will be going that way.

:JB

[Steve201]

JB..I was on medium dosage of prednisone long term..took me a few yrs to get off of it cuz everytime I did..I'd flair up….finally got wheened off of it and by then the damage to my pancreas was done…that's why I'm diabetic….I have changed my diet ..eating less pasta (I'm italian..this kills me)..eating more salmon.(hate fish)…knocked off all the donutes and stuff…my weight ballooned to 195lbs..(I was 160lbs before I got sick)….I'm now down to 173 lbs and trying to slowly work my way down to my fighting weight…160-165…….

please do let us know when your in town….

 

Steve

[mkbeeliever]

[user=2380]Steve201[/user] wrote:

Hi Mkbeleever..

thanks for your comments …I am glad you follow..but it would be nice if you introduced and posted over there too….we're a happy group…:D
 
Steve

Hey Steve,
I did post 3 times a while back when my mom was first diagnosed, but no one ever<span style="color: "red"] [/color]answered me…“>It's OK though!!  My feelings weren't that hurt!  Lol!  I will try again soon!  It's kinda quite over there!  But like you said, you are a happy group and are helping a lot of people!

[Cheryl F]

Steve, Steve, Steve!

So great to see you here!  I first “met” Steve on the Scleroderma Foundation Discussion Forum.  This guy is a NUT!  Always upbeat with a joke to tell or a funny remark!

We are so glad you are here.  The SD fellas need to know just how far you have come!

Welcome!

Cheryl

[Steve201]

[user=2]Cheryl F[/user] wrote:

Steve, Steve, Steve!

So great to see you here!  I first “met” Steve on the Scleroderma Foundation Discussion Forum.  This guy is a NUT!  Always upbeat with a joke to tell or a funny remark!

We are so glad you are here.  The SD fellas need to know just how far you have come!

Welcome!

Cheryl

HEY!!!…I resemble that remark!!….it's true…Cheryl met me on the other site……thanks for the greeting….I'll post something of my story where I can here…still trying to figure out where and what things are….don't wanna get banned right off the bat ya know….

Steve

[Cheryl F]

[user=2380]Steve201[/user] wrote:

don't wanna get banned right off the bat ya know….

Banned?  Here on RBFBB?  Not a chance!! Well, I guess if there ever was someone who might get banned, it might be you Steve!!:roll-laugh:

I haven't forgotten your advances toward Jessica on the old SD site! (It was all in good fun, and almost good taste).

Steve is a joker, my first recollection of Steve was him posting about being in line at Walmart with a large bag of dog food, and the lady behind him asked if he had a dog, and he replied no, he is on the “dog food diet” and he went on and on about how convenient it is to keep the kibbles in your pocket for a snack!  SD didn't take away Steve's sense of humor.  He is a laugh a minute, but also a real compassionate and supportive fella.

Again, we're glad your here!

Cheryl

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