Livedoid vasculopathy

@swing1929

Hi Jenn, So sorry to hear about your situation. Theres an amazing book that has helped me out a great deal for home remedies to pain called:

"The end of pain"
By: Jacqueline Lagace, PhD and Jean-Yves Dionne

I highly recommend it which goes into detail on how to change your diet naturally.

I would also look into the "Fork over Knife" eating program. I am just starting this program removing meat and dairy to clear out the arterial system in order to battle wounds and clotting factors that contribute.

I hope this helps!
Martin Lemieux

Welcome back Martin! It's great to see you back on Connect. I know you've been busy sharing your patient experience with professionals, and a conference and more.

Jenn, I'm so glad that you chose to post a message to Connect after having followed the discussions for a while now. Welcome!
Have you been following this discussion called "Treatment options for Lividoid Vasculopathy (LV)" http://mayocl.in/2cH8jhA

@zenk @vickieb @marlene64 @gonefishinmt @patientrea do you have any thoughts about complementary therapies for LV? See Jenn's message above.

Hi Jenn, I am so sorry about your new ulcers. Mostly, I am sorry about your lack of insurance. As you have seen, Xarelto works for a lot of us in keeping the Ulcers at bay. Were you taking Rivroxaban when your ulcers came back? Can you afford just one trip to a dermatologist or a doc that knows your LV history? Sometimes they will give you some samples and direct you to a clinic that would treat you . As far as I know, there are no proven homeopathic products or treatments that would deliver blood supply with the needed oxygen to your ulcers so you can heal. I hope you can find a way to get to a doctor who is familiar with LV.
I know how expensive Rivroxaban is, I just got a refill at Walgreens today and I nearly fell on the floor. Keep in touch Jenn. You have been so kind to me in the past. Zenk

I was diagnosed with Atrophe Blanche 22 years ago, since then I have been through sooooo many ulcers on my ankles they seemed to mimic from one leg to the other for years. I used to have to have my ulcers cauterized monthly to help heal the ulcers. For the most part I can keep them under control. But in the last few years I have gotten some that will last up to 4 or 5 months. Last summer I had them going all across my toes and in between them on my right foot which lasted 3 months. But for the most part now they come on my right ankle and stay for months. I am on one now since before Thanksgiving and I just can't seem to kick it. I take trental, dipyridamole and folic acid. The burning is so unbearable, and for the last two ulcers I have had the new thing is the burning of the muscle up my leg. it makes it so hard to walk. I have not been told I have livedoid vasculitis but from what I read it sounds like I have that as well. I live in Michigan and have been to the University of Michigan hospital as they are the ones that found the combination of meds. . I am currently on there is nothing else they know that they can do. I found on the mayo clinic site that there was a treatment they were doing I am trying to get connected with them but I have not been successful can anyone help. Thank you.

Hello @grandmaabby,

I'm so sorry to learn about your condition, and I'm glad that you've come to the Connect community; you will find that you are not alone, here.

If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63. The number for Mayo Clinic in Minnesota is 507-538-3270

The name atrophie blanche is also sometimes applied to conditions associated with livedoid vasculitis, livedoid vasculopathy, or livedo reticular and patients who present with atrophie blanche may have serious vascular inflammation.
A couple of members @angelasmom and @famalvar75gmailcom have talked about atrophie blanche in the past, and i hope @spence, @amjor2, @vickieb, @swing1929, @zenk, @marlene64, @patientrea, @gonefishinmt, @mlemieux, will also join in and share their insights.

You may also wish to view this discussion about, "Treatment options for Lividoid Vasculopathy (LV)" here: http://mayocl.in/2kZ4s0k and this Mayo Clinic patient story: http://mayocl.in/1l54vIS

@grandmaabby, such debilitating conditions are not only physically draining, but can affect one's mental/emotional well-being too; how are you finding relief right now?

I have livedoid vasculpathy

Primary or secondary polycythemia?

Presently, my scars have started hurting much worse and I have an ulcer forming in the center of the scar on my right ankle near my Achilles tendon

So good to hear back from you @spence!
Were you diagnosed with primary or secondary polycythemia? What symptoms led to this diagnosis?

Secondary
It started with atrophie blanche and ulcers and got worse when the nerves in my feet were affected
Now im diagnosed with erythrocytosis and have a monthly phlebotomy scheduled