Limited Scleroderma

[buttonup]

Good Evening – I have the limited variety of scleroderma. What improvements have you seen short term? Long term? What was the first symptom you felt was diminishing? Very interested in others history with the disease

[Valsmum]

Welcome to roadback, hope you find relief, I don’t have sclerderma, but I wanted to say welcome and hope you feel better.

[JeffN]

I have CREST/limited also. You might check out my post in the personal history thread area. I need to update it but in short I have done really well with mino. I am currently taking 100mg once a day every day. I have my life back and feel very well.

PM me if you wish.

[buttonup]

Hi Jeff N – I tried to find your personal history but couldn’t locate. Can you please provide a date so I can find.

Thanks,
Buttonup

[buttonup]

@JeffN wrote:

I have CREST/limited also. You might check out my post in the personal history thread area. I need to update it but in short I have done really well with mino. I am currently taking 100mg once a day every day. I have my life back and feel very well.

PM me if you wish.

Hi JeffN – I’m still not real faciliar with this site. Can you please provide a date or tell me how to locate your personal story. Thanks, Buttonup

[lynnie_sydney]

button up – below is the link to Jeff’s post in the Personal History section of the Forum. It dates back to 2009, so it would have taken some searching through those pages!

viewtopic.php?f=3&t=2539

Jeff, you might want to paste this link into your signature so folks can click on it to read about your journey.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[buttonup]

@buttonup wrote:

@JeffN wrote:

I have CREST/limited also. You might check out my post in the personal history thread area. I need to update it but in short I have done really well with mino. I am currently taking 100mg once a day every day. I have my life back and feel very well.

PM me if you wish.

Hi JeffN – I’m still not real faciliar with this site. Can you please provide a date or tell me how to locate your personal story. Thanks, Buttonup

Thanks Lenny for the Short-Cut!

Hi Jeff: Thanks so much for the inspiring journey you have traveled. Can’t wait to read your update when you get around to it. What dosage level of Mino did you start with? Which protocol did you follow?

[JeffN]

Sorry buttonup I was not trying to be evasive. I’ll post an link in my sig line as per Lynnie’s suggestion. I began on 100mg twice a day seven days a week, I guess that would be the Harvard Protocol. I began in Jan of ’06 and over a year ago I reduced my evening dose to every other day. Last spring at some point I eliminated my evening dose all together and have been on 100mg taken midmorning every day since. I’ll update my original personal history soon. A brief “cut to the chase” update is that I am doing great. I still have a little curvature of my index and middle fingers, my hands are still somewhat sensitive to hot and cold – my hands are probably back to 90+% I am an electrican and am back at work full time and have no issues in regard to working with my hands, my hands don’t feel like they are in a bucket of broken glass all the time, edema is gone, fatique is gone, I still need a good nights sleep but no naps. my Raynaud’s is still there but greatly reduced and I can mostly deal with that, aside from those minor things I have my life back. I feel that my SD stopped progressing and began reversing almost as soon as I began taking mino. To my knowledge I have no SD symptoms/issues that are progressing, I feel really well and for now at least for now have put the SD behind me. I’m back to all to all my pre SD activities in regard to work, fishing, scuba, snowboarding and just so glad to be back. The only activity I have not tried again is surfing, I keep thinking I’ll get back out and try again but I was never any good at it te honest and have not had the time, maybe this summer.

[Author]

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