Hoping to start treatment….looking for advice

[Mcqueston87]

Hi guys(ladies) I was diagnosed with sd about a year and a half ago, as well as rynaud’s and another rare bone disorder called melorheotosis. After reading the book ” scloroderma, the proven therapy that can save your life” I don’t believe my case is all that bad yet compared to some. However every year around this time I develop ulcers on my fingertips that turn into a dry gangrene and neither my pcp or my reumatoligist seem to have any clue as to why other than severe rynauds. I have tried many specialist including vascular surgeons who are puzzled on what is going on. I am a young male(25) with two young daughters and a wife that I would like to grow old with, I want to stop this in it’s tracks( if possible) to try and resume a normal lifestyle. I am looking for any information on doctors in the central mass/ Boston area that can help me. Anyone live around here with some info that could help? I am so glad I have stumbled upon this foundation and members like you with positive news, until now it has just been dead end roads and un-satisfying answers from puzzled doctors that either don’t know or donT want to give me a truthful answer on this disease, any info would be greatly appreciated thank you!

[Maz]

@Mcqueston87 wrote:

However every year around this time I develop ulcers on my fingertips that turn into a dry gangrene and neither my pcp or my reumatoligist seem to have any clue as to why other than severe rynauds. I have tried many specialist including vascular surgeons who are puzzled on what is going on. I am a young male(25) with two young daughters and a wife that I would like to grow old with, I want to stop this in it’s tracks( if possible) to try and resume a normal lifestyle. I am looking for any information on doctors in the central mass/ Boston area that can help me. Anyone live around here with some info that could help?

Hi McQ,

Welcome to the RBF discussion forum. You’ll find many SDers here who using AP (antibiotic protocols) to treat their disease with good success. Minocycline is the central therapy, but others prefer to go a bit more aggressively with IV clindamycin, too, as Dr. Brown would have done.

Of note is that a good number of SDers are also finding they have concomitant Lyme disease and other tickborne coinfections, so in order to make a decision as to which type of doctor to see, will begin by getting IGeneX testing run, which is a more sensitive test for Lyme. Sometimes folks already know they have had past tick exposures or positive standard tests. Getting tested isn’t a pre-requisite for starting AP, however. It can just be important in terms of which anti-microbials may be needed in addition to minocycline.

There is a good AP doctor in Northampton, MA, who is also somewhat Lyme Literate. I will send you his contact info in a PM (private message). To retrieve your PM, just click up top beside your User Control panel where it will say, (1 new message). We have an anti-spam system in place that requires all newcomers to post three times before they can send a PM or post without moderation. This just helps moderators weed out spambots and posters trying to sell things.

For digital ulcers, there are a couple of remedies I recall that SDers have used with some success. These are nitrobid paste or also manuka honey. These might require using these at bedtime with cotton gloves.

Hopefully, the SDers here will chime in with what has helped them, McQ. If you stick around here, you’ll become an expert on AP and supportive adjuncts in no time! It’s not a bad idea to get started on a good probiotic in advance of beginning AP, too. 😉

[Mcqueston87]

Thank you very much maz…. I will get in contact with that doctor ASAP there are two of them within 45 minutes of me and I had no idea. I have found if I keep the ” dead spots ” ( as my rheumatologist called them) on my fingers wrapped and loaded with antibiotic ointment they will slowly heal however it takes 3-6 weeks before they are better and the exposed nerve endings to stop being painful with the lightest touch. Again thank you for your immediate response and info!

[Maz]

Glad you got your PM okay, McQ! Please come back and let us know how you get on.

Yes, those digital ulcers are very painful, so I understand. Hang in there…hopefully, once you start your AP, you’ll be on your road back in no time. 😉 You’ll get lots of support here from your fellow SDers, too, so any questions you have, just post here and someone will chime in with some personal experience, even if we don’t always have all the answers.

[JeffN]

I have been on mino for over five years and have had a great result. You might be interested to know that the first progress I noted was my digital ulcers began to heal within three weeks. They have not returned. I was on 100mg of generic (Watson brand) mino twice a day seven days a week. If there had been a doc nearby that would have done IVs I might have gone that route, I know I would seriously have considered IVs. So far the pill only program has worked so I am just engagaing in a bit of second guessing. Good luck with your AP.

[Author]

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