Livedoid vasculopathy

@msmerry, Livedoid vasculopathy is sometimes also referred to as ‘livedo vasculitis’, ‘livedoid vasculitis’ and ‘livedo reticularis with summer ulceration’. I'd like to bring in @prairiesmoke @angelasmom @mlemieux @zenk @patientrea @cleverrover to see your post and possibly answer some of your questions. Mlemieux also lives in Canada and may have some insights about care in Canada.

You may also be interested in this discussion:
- Treatment options for Livedoid Vasculopathy (LV) https://connect.mayoclinic.org/discussion/i-am-looking-for-outcomes-in-the-use-of-blood-thinners-in/

Pain is wearing for sure. Do you have a concern about taking Trental? Is it still working for you?

I wanted to edit my comment here but couldn't find where I could do that so I am replying to my own post. I thought of something that might be of interest to anyone doing their own wound care at home. I found some Hydrocolloid Gel Bandages that my wounds seem to like. A bit expensive but they can be worn for a few days depending on your wounds and any weeping. If I am allowed to say where I got them, I found these on Amazon, and they are made by All-Health, Advanced Fast-Healing.

Are Livedoid Vasculopathy and Vasculitis the same? I was diagnosed with LV after 7 years of not knowing what was happening to me...skin grafts that didn't take, stripped veins and so many Drs. all saying it was not vascular...until one day 7/8yrs ago and after 2 years of serious ulceration and excruciating pain I begged to see a surgeon. Not sure why, but that surgeon is the one who said "I think you have been mis-diagnosed" and he did a live biopsy and sent it right here to the Mayo Clinic. It came back positive for LV and I was put on Trental immediately and within 6 months was back in remission. ( Both feet- one on the top of my foot and both ankles on the other) I have had several flare ups and currently in another very painful bout which has so far been 11 months and both feet again. I live in Canada and my Dr. says the only medication they can give me and the best one is Trental. I have been at this for over 15 years now and even knowing what is happening and what to expect I think the pain is wearing me down after 11 months. It is a lonely fight as it is rare so I am happy to have this connection and will check out the other you mentioned. Thank you so much angelasmom for helping so many out.

The best way to find out would be to reach out with an appointment request. If interested, you may use this link: http://mayocl.in/1mtmR63

We understand that Dr. Shields at Mayo in Minnesota treats LV. Are there physicians at Mayo in Florida that also work with LV patients?

Hello @timsleg and welcome to Mayo Clinic Connect. LV is classified as an uncommon disorder and one that has been seen and treated at Mayo Clinic, yes. I thought you may find this patient story helpful.

- Surprise Diagnosis Spurs Learning Curve, Search for Help:
https://sharing.mayoclinic.org/2015/11/25/surprise-diagnosis-spurs-learning-curve-search-for-help/
If interested, you may use this link to request an appointment to be seen:
http://mayocl.in/1mtmR63
Will you please come back and provide an update as to your decision and next steps for your husband?

My husband was recently diagnosed with LV and has a very painful large sore on his ankle. No docs in our area have ever seen this before. Is there any doctor at Mayo or elsewhere that have treated this disease? What type of doctor would we look for?
Thank you for any info.

@cleverrover perhaps look into a meal subscription box service that could make the transition a little easier. I believe there are some that cater to a whole foods diet and having the food delivered takes a lot of the guess work out of switching food choices when that's what you have to cook.

We did talk about it briefly. It would certainly be a huge and difficult lifestyle change. Since he's been dealing with this for many years and has tried pretty much every medical treatment we can find with little relief, he's open to trying it. I think 100% adherence would be difficult so we wonder if just some diet changes would show any improvement.

LV is a problem leased sympathized by doctors. For many sufferers this is primary reason it is such torture.
I've had this God forsaken disease for 12 years. What I have learned has not come from the medical profession.
Iodine, internally and externally is a valuable tool to stopping ulcers growing. Consumption of multivitamins and minerals is beneficial. Cold packs and paracetamol help the pain. Ciprofloxacin is the preferred antibiotic.
I have stupidly ignored my own advice and notes at times and needed to take a long path back. Here are some images if you can stomach the sight.