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Wow, Nicole, what a special and amazing post! I am so very glad that you found your way here! I can't wait to hear about your mom's road back!!! It is easy to see how such a wonderful mom created such a beautiful person in you! Good luck with Dr. S! I am seriously considering making a trip myself as I seem to be lost in nowhere land here in CT! In anycase, thank you for sharing and my prayers are with you and mom for a successful and empowering trip to Dr. S!
Nancy
[user=223]Randy[/user] wrote:
Hi everyone,
I'm new to RBFBB SD group and I just wanted to introduce myself.
I started having swollen hands and other symptoms Apr 07 and was finally dx'd Dec 08 with SD. It was upgraded to diffuse this Feb. I have been on 100 mg minocycline twice daily since 4 Feb 08 and saw Riverside Calif AP specialist doctor this week. I will change to Minocine shortly and should begin a pulsed Clindamycin IV AP next week.
I am ready to beat the hell out of my SD. Go AP!
Randy
🙂
Hi Randy-I'm new to the boards and wondering what you thought about the doctor in Riverside? I have an appointment in six weeks. Karen (mkjuz)
I'm new to the boards also and I am also seeing Dr. F in Riverdide in 3 weeks. I too would like to know how you are doing so far. I too am ready to beat the crap out of this disease. I was diagnosed with SD 2 years ago but my symptoms have progressed on the slower side. My most bothersome issue is my tummy troubles. I'm seeing my GI dr tomorrow to figure out if my problems are due to the SD or maybe something else. The tightness in my skin has only affected in my hands and around my mouth (so far).
This site has helped my tremendously, thank you all for your stories and advise.
TerreI'm new to the boards and wondering what you thought about the doctor in Riverside? I have an appointment in six weeks. Karen (mkjuz)
Karen,
My daughter is a patient of Dr. F in Riverside, please feel free to send me a PM on this system (or an email, my address is listed in my profile), I am happy to give you my impressions. We will be there on May 27th & 28th again.
Terre:
Good luck!
Cheryl Ferguson
For people with SD or MCTD, do you guys still work while on AP? I feel like falling apart, just cannot keep up with everything. By the way, I work 3/4 time (30 hours a week) with summer off.
Ignore my question if this is too personal.
Thanks,
JB
Hi JB,
Yes, I still work, and in fact am working today…..and today is rough! That's because yesterday was my last day of my 2nd clindy IV cycle. For me, I herx the worst the day after the last day of IV's. Typically if I take Tylenol not too long after the IV I am pretty much functional until lthe Tylenol starts to wear out. But for me, Tylenol doesn't do much for the day after IV's, like today.
I'm working today because I don't have the vacation time to take today off. And, yes, I am hurting today. However, I do expect to feel a ton better by tomorrow.
Go AP, blast the bastards!
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"jb, how are you doing? Are you major herxing, i hope not. i'm trying to work, but it's really overwhelming me right now, cause i have so many issues going on. i hope you get to feeling better soon. I'm kind of low key right now, just trying to survive if you know what i mean.
Hey Guy's,
Kudos to you guy's who soldier on working outside the home, especially with kids. I have four kids (my oldest has aspergers syndrome) and I find it really hard (physically/emotionally). I don't know what I would do without the support of my retired parents coming over daily during the week to help with housework, appointments, kids etc. So guy's you're in good company. I am very blessed not to have to work but with four kids the extra income would be nice.
Hugs,
Steph
I am doing okay with my herx. I consider the herx I have is mild comparing to the month I was first diagnosed. Most of the pain and swelling are in the mornings. It was a very hard week for me because I don't want to have too many paid sick leaves and TGIF!!!
Randy, I had my IV last week and this week I am having a blast (Herx) :headbang:Hope we are on our way to better health!
JB
Not everyone has to herx do they ? I'm starting my minocin Monday, when it get here from Canada. And oh by the way someone needs to post a list of abbreviations to the road back site. I know I get lost till I have heard some of them several times, such as what is MP and also Harvard Protocal, these are two new ones on me.
Mino bound next week !
Nico
Hi Nico;
It took me several months to clue in to most of the abreviations we use.Harvard Protocol is basically 100mg minocin 2 times a day with no food 2 hours before and after taking the capsule.It is just one of many AP(antibiotic protocols) and is the one used by Dr.T at Harvard University.MP is an other AP and the one used by Dr. Marshall that is the most scientific of all of them http://www.marshallprotocol.com It is also the most restrictive of the gang but the most likely to (possibly) be a cure
When ever you do not understand a term tell us because the list is sooooo long that we can't possibly do a dictionary as a person with SD does not necessarily use the same terms as a person with Ankylosing Spondilitis.They are both TH! immune diseases.TH1 is opposed to TH2 that people with Aids have.Good way to remember this TH1(ours) is UP and TH2 (theirs) is down.Their immune systems are so low that they catch every little disease that may blow their way and they just can't fight themI read your March post and wondered what kind of diet you used? I have just started Minocycline for localized scleroderma. Thanks for any information or references you can provide.
katy
Ive been told about a yeast problem , is there anyone out there that can fill me in on this ?and yes what is a good diet to help with AP protocal?
Nico
Hi Nico,
You wrote: Ive been told about a yeast problem , is there anyone out there that can fill me in on this ?and yes what is a good diet to help with AP protocal?
Much has been posted on this subject. If you will scroll up to the very top of the screen, you will see a little white Search Window. If you will type “Yeast Overgrowth” into it, many posts will show up on this subject. You can just click on these and read previous answers and recommendations.
Good luck,
AF
Hello to all,
I just signed up yesterday as a new member of the RB Foundation group. My name is Victoria (daughter of Nicole). Many, many of you have read and responded to my wonderful daughter's posts with invaluable information, delivered with kindness and concern – and for that I thank you from the bottom of my heart.
As Nicole reported, after 11 months of seeing neurologists who ran countless tests, in early 2007 I was referred to a rheumy who diagnosed me with SD/MCTD. I immediately thought he had misdiagnosed me so I saw another doctor who confirmed SD…the disease with no treatment and no cure, etc. etc. The usual potent drugs were prescribed, with little effect.
However, thanks to you I am very happy to report that on May 11th, Mother's Day, Nicole and I will travel to Ida Grove, Iowa where I will have 5 days of AP treatment with Dr. S. I am both excited and anxious about the treatment, but am also optimistic that it will put this horrible SD into remission.
I have read and re-read everyone's posts and I am overwhelmed with the love, kindness and support shown by this group. I eagerly read JB's daily posts as she was in Iowa with Dr. S and I will do the same while I am there. JB, I would like to send you a PM before I leave, if that's okay.
I am so thankful for my sweet and caring daughter's tenacity in researching the web for endless hours and finding the RB Foundation and all of you. This will be my best Mother's Day ever! Victoria
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