Comments on: To Treat or Not to Treat

By: Evelyn Herwitz

Evelyn Herwitz — Tue, 07 Jun 2016 00:58:33 +0000

Hi Charlotte,

I’m so sorry to hear of all you’re going through with digital ulcers. I do not have the extreme form of tissue loss that you describe, with visible bone. I would assume you’d need a skin graft of some sort, but only your physician could advise you about that. I’m sure it’s quite painful, and exposed bone puts you at greater risk for more complex infections.

You are correct, that technically you should be testing for type of bacteria each time there is an infection. I have just had so many infections over a period of decades that I’ve worked out a protocol with my physicians to start treating with Minocyline, which is the one antibiotic I can easily tolerate that is a broad spectrum antibiotic. If that fails, then we go deeper into analysis of the infection and treatments. I know my body well and the symptoms of an infection at early stages, and with this approach have been able to avoid IV antibiotics for at least a decade.

I have developed this approach with my infectious disease specialist as well as both rheumatologists. I encourage you to get a good team, and an ID specialist as part of that, if you don’t already have one. You may also need to consult with a hand surgeon and/or dermatologist regarding repairing your finger with the exposed bone.

Best of luck to you, and be well. The digital ulcers take tremendous patience to care for, as I’m sure you know. I hope this is helpful.

By: Charlotte Diep

Charlotte Diep — Sun, 05 Jun 2016 12:04:43 +0000

Hi Evelyn, I too have systemic scleroderma and would like to ask you :
– Before taking the antibiotics for your infected digital ulcers by yourself, don’t you need to first test the type of bacteria ? When I have infected ulcers. I have to test the pus that comes out which gives the specific antibiotics that I can take to treat this bacteria and the antibiotics that are resistants. And everytime it happens to be different bacteria and different antibiotics that I have to take.

– I have lots of digital ulcers and with it, tissues losses at the tip of fingers. At the point that a bit of the bone is visible. When the ulcers will heal, can the bone be covered again by healthy tissues? Can you please share your experience if you have had this particular case too.

Thank you for your help.

By: Evelyn Herwitz

Evelyn Herwitz — Wed, 27 Aug 2014 16:05:34 +0000

In reply to Pat Bizzell. Thanks, Pat. Not to sound too much of a doomsday sayer, but I really worry about a major outbreak of some bacterial strain in the future, with no resources to treat. In 1918-19, influenza killed 50 million people worldwide, 2 1/2 times the number of soldiers and non-combatants killed in WWI. We need to be thinking long-term benefits, not short-term profits--and not only for those of us fortunate enough to live in the Western World.

By: Pat Bizzell

Pat Bizzell — Tue, 26 Aug 2014 20:12:39 +0000

Really liked your comparison of the medical research costs with costs for predator drones. It’s a constant rant of mine: how much public good could be accomplished even with just a little of the money now spent on military hardware.

Glad your infections are clearing.