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angelasmom
@angelasmom

Posts: 8
Joined: Aug 03, 2011

Livedoid vasculopathy

Posted by @angelasmom, Aug 3, 2011

Looking for people with the rare blood clot and leg and foot ulcer disease of Livedoid Vasculopathy. Mayo seems to be experienced at treating this disease so I thought I would find you here, I have it.

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famalvar75@gmail.com
@famalvar75gmailcom

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Joined: Oct 05, 2012
Posted by @famalvar75gmailcom, Oct 5, 2012

My name is Alejandro, im 35 years old and was diagnosed 1 year ago with livedoid vasculopathy. I have atrophie blanche and livedo reticularis and I get very painful ulcers on my ankles. If anyone knows more about how to get good treatment please let me know


angelasmom
@angelasmom

Posts: 8
Joined: Aug 03, 2011
Posted by @angelasmom, Oct 6, 2012

Good morning Alejandro I am a 54 yo mom. I worked many years as a rehab therapist before LV forced me to retire as disabled. /this gives me some background in health that is helpful. I have atrophie blanche which is mostly helpful to help MDs diagnose us. I started to have ulcers 5 yrs ago .Diagnosed 3 yrs ago. Most importantly I’ve been in remission for 19 months. That is I have no ulcers. I have slight foot swelling and slight neuropathy.. As you may know the disease is not curable but we have periods of attacks or flares and if we are lucky and find what treatment helps us we have remissions too.
My theory is that L V is an auto-immune disease of the blood. The autobodies in our blood responsible for making scars that stop our cuts bleeding and kill germs malfunction and start making scar plugs in the middle of our tiny leg blood vessels for no good reason. This cuts off blood to the skin and starts ulcer.s. I am sorry if I am repeating info already familiar to you. Ignorance about LV amongst sufferers and doctors is our biggest obstacle.
Where are you being treated ? Do you have a dermatologist? I am keeping and reporting a list of treatment centers recommended by LVers for every part of the country and hopefully the world..
I take anti platelet drug dipyridamole and trental to increase circulation to extremities, I wear strong compression stockings daily because swelling triggers those clots and slows healing. Others take much stronger blood thinners hyperbaric oxygen and Intravenous immunoglobulin therapy
Really what you need to do is go to Imspire.com skin conditions group. Look up every post on lividoid vasculitis first then every post on livedoid vasculopathy. the on line community of Lvers has been our most powerful help against the disease. See you there Angelasmom .


famalvar75@gmail.com
@famalvar75gmailcom

Posts: 2
Joined: Oct 05, 2012
Posted by @famalvar75gmailcom, Oct 7, 2012

Hi angelasmom,thanks for sharing with me what you’ve gone through I know it’s not easy to live with LV. I’ve had LV about 6 years but was just diagnosed a year ago. Back in December 2011 I was hospitalized because I had a mega flare up! It was so bad that I got gangrene I had 3 really big ulcers the size of baseballs and I could not walk because of the pain and swelling.Thank God for a Dr. Named Dr. Marc Hare, he works at the center for wound healing and hyperbaric medicine,he went to see me at the hospital. I go to see him once a week for the ulcers and he diagnosed the LV, I also see a hematologist every 2 weeks to check my inr as I am on caumadin. In the beginning I was seeing a vein doctor and had some surgery done but as you said this disease has no cute yet, only the symptoms are delt with not the problem.i pray one day we may be cured of this disease, at the moment I am also in remission, oh and I also had skin grafts put on my ankles.


angelasmom
@angelasmom

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Joined: Aug 03, 2011
Posted by @angelasmom, Oct 7, 2012

Hi Alejandro Thanks for replying. Where is Dr. Hare and the wound care center? Would you recommend them to other LVers? Do you know anyone else with LV? You know I had skin grafts too! When my LV had slowed down I had not had new wounds for a year but 2 little ones were just hanging on refusing to close for 16 months Dr. Phillips at the Boston Medical Center put Apligrafts on me. lab grown skin made of stem cells. No problems since!. I found my cause of LV was cryoglobulinemia. That’s when a blood antibody that only separates out of the blood in cold weather,cryoglobulin, causes clots. It’s not that LV has no known cause. It has multiple contributing causes sometimes different for different people. If you are interested I will try to post a article listing the many possible causes. Some have been able to find their contributing factors and helped control LV. Article is also posted on Inspire.com under “Causes of Livedoid Vasculopathy. Angelasmom


amjor2
@amjor2

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Joined: Mar 11, 2013
Posted by @amjor2, Mar 11, 2013

hi friend….found this site while looking for any new info on LV.


Spence
@spence

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Joined: Jul 13, 2013
Posted by @spence, Jul 13, 2013

Hi, I suppose I’m blessed I was diagnosed with LV a little over two years ago. Because of a very good podiatrist. I have since undergone a venous oblation on my left leg , I have been in compression stockings ( waist-high) ever since. Unfortunately my body nullified the surgery and my left leg is worse now. My right which had ulcers and is scarred up hasn’t broken open again but…well you know how that goes. Whenever it gets hot the ulcers reappear. 🙁 but it could be worse. On the bright side my feet are somewhat famous being in medical journals for being a classic example of LV. I already had gout before this started and have mobility problems because of that. It was so good to find this forum. 🙂 having a sympathetic easr is important.


angelasmom
@angelasmom

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Joined: Aug 03, 2011
Posted by @angelasmom, Jul 18, 2013

Hi Spence I am sorry for your continuing ulcer problems and wish you some relief. Venous insufficiency for which you probably had your surgery is a contributing cause for LV but not the only 1. What meds do you take to stop the blood clots? Are you treated at Mayo?


sheila sears wichmann
@prairiesmoke

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Joined: Oct 23, 2013
Posted by @prairiesmoke, Oct 23, 2013

I had posted to angelasmom about 2 years ago concerning LV. I have had it for years, as apparently did my grandmother. Diagnosis was done 2 years ago by tissue biopsy. I had the aplagraf treatment and it partially healed the ulcer on my ankle. It took another year to heal the ulcer, which broke open again after 4 months. I am getting tired of being a guinea pig for doctors to practice on. The PA who finally figured out what was wrong with my ankle tried to get someone from Mayo to look at me, but apparently I wasn’t bad enough for them to bother with, so I never got to talk to anyone who has actually dealt with a bunch of LVrs. If I sound unhappy, it is probably because the incessant pain and irritation from the ulcer gets me down after a while.

I can describe symptoms and if anyone out there has similar and has a way to help the LV, please let me know.
Symptoms start on my ankle as a small spot or sore that won’t heal, but gets bigger. There is a redness around the area and tiny red spots like mini blood clots appear beneath the skin. The ulcers have been irregular in shape and often appear after a bump or bruise to the ankle, especially in warm late summer to fall weather. When the ulcer finally heals it is after the first of January and slowly granulates and fills in. It doesn’t like being dry, or too wet. Medihoney keeps infections out, but the Ca alginate in the honey interacts with the exposed nerves in the ulcer and the thing burns like blazes for an hour or more after I change the dressing. (needless to say I don’t change the dressing before I go to bed)

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angelasmom
@angelasmom

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Joined: Aug 03, 2011
Posted by @angelasmom, Oct 23, 2013

Hi Shiela My goodness this is the 1st I have heard of LV being hereditary
or perhaps your root cause disease being hereditary. That alone will be a
surprise to our small LV world. I hope if you live close
enough someday you will try Mayo again they have done much good for some
people. If you care to let me know your state I may have recommendations
for local medical centers from other LVers.Sorry about the failure of
apligraf but I always suspected if one were having a flare it would
sabotage the graft. nly worked for me because I had lingering old wounds
after flare died down. What meds for LV are you on ? what meds for pain
are you on? Thanks Angelasmom


Spence
@spence

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Joined: Jul 13, 2013
Posted by @spence, Oct 24, 2013

My Hematologist tested me for a factor that decides if my hypercoagulability is a heriditary risk the (fortunately for my descendants and me) tested negative. Thanks angelas mom.


angelasmom
@angelasmom

Posts: 8
Joined: Aug 03, 2011
Posted by @angelasmom, Oct 24, 2013

Hi Spence I take it you have Livedoid Vasculopathy/Vasculitis? Do you
recall the name of the disorder your Dr was testing for or the name of the
test? Thank you.


Spence
@spence

Posts: 10
Joined: Jul 13, 2013
Posted by @spence, Oct 24, 2013

I wish I could remember maybe if she starts a new practice soon I will be able to ask her all this healthcare stuff has chased some of our best doctors out of working for the speed hospitals I may have to find someone else and start over. 🙁


sheila sears wichmann
@prairiesmoke

Posts: 10
Joined: Oct 23, 2013
Posted by @prairiesmoke, Oct 31, 2013

Hi Angela’s Mom,

I have been trying to write this, but every time I get started so more
trick-or-treaters come to the door. After reading Stan’s post I think he
was being checked for Factor V Leiden in his blood. It causes blood to
clot more quickly than normal and people who have it are more prone to
getting blood clots. Over 20% of LVrs have Factor V. I have Factor V and
have had a number of small clots in my legs over the years. The ulcers on
my ankle appeared about 15-20 years ago. My grandmother had ulcers on the
same ankle, in the same spot off and on for about 40 years, I even have a
picture of her in her 70’s with the ankle wrapped. I have a sneaking
suspicion if doctors who test people for LV were to test close relatives
who didn’t have the ulcers they would find some of the relatives would have
LV, they just don’t show the symptoms yet.

What have I had done to my leg to try stop the ulcers? I have had parts of
veins removed twice, been treated with infrared light and prostaglandins,
treated with high frequency ultrasound, had the ulcer injected with fish
oil, aplagrafted, wrapped in zeroform, patched up with medihoney, soaked in
vinegar water, dusted with turmeric, tried a jalapino pepper poltuce, etc.
I take aspirin, Tylenol or ibuprophen for the pain, and occasionally put a
bag of crushed ice or frozen vegies on the ulcer. There is some new
research out on using a low frequency ultrasound patch for 15 minute doses
that is supposed to stimulate tissue regrowth,but that is still in the
testing phase.

I am in Fargo, ND and the medical community does not know what to do with
LV patients. Wound care is about the closest we get here and they are used
to treating diabetics, not LV. If you know of anyone up this way, please
let me know.

Sheila

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Martin
@mlemieux

Posts: 73
Joined: Aug 15, 2014
Posted by @mlemieux, Aug 15, 2014

Sheila. Thank you for sharing!! I’ve tried a bunch of useless therapies as well. Have any of the above therapies worked even for a short time? I have massive ulcers on both legs which have been wrapped with; bandages and coban 2-layer compression wraps for 6 years now. I’m getting desperate to find something, anything that will work.


sheila sears wichmann
@prairiesmoke

Posts: 10
Joined: Oct 23, 2013
Posted by @prairiesmoke, Aug 15, 2014

Hi Martin,
You asked what has helped heal the ulcers. I have had only one ulcer on my ankle, about the size of a nickel now, off and on for almost 20 years. the ulcer seems to start up in the early to mid fall from a bump or bruise. Last August it just started up again after being healed for 4 months after apligrafts. The Dr. asked me if I wanted to try another graft but I said no. They cost a lot and for something that takes months to heal even after the graft and then breaks open again after only 4 months the thousands of dollars aren’t worth it. I have a lot of skin allergies, so I can’t use adhesives, or xeroform dressings, and NOTHING with latex near the ulcer or my whole ankle goes crazy with small blisters. I use medium weight TED stockings to hold on non latex containing wound dressings and medihoney(calcium algenate in it for structure) directly on ulcer to keep down infection. I clean the ulcer every day with a mild vinegar wash. I also get small red spots on toes and feet from the tiny aneurisms breaking in my capillaries. This gets worse if I stand for any length of time, and if I drive for long distances. I have to get out and move my legs, walk, dance, whatever. When I sit I have my foot up on a table, or a box at work. My ulcer doesn’t like being damp, so I try to keep the moisture content of anything I put on it to a minimum. It will heal from the bottom up, but it seems to take forever. I take 2 aspirin at nite to try head off blood clots, and I take 2 ibuprophen in the morning to lessen the pain when I change the dressing on the ulcer. If I want to spend a miserable nite, I change the ulcer dressing before bed and then try to find a spot where the ulcer isn’t touched by covers, or my foot, etc. This probably won’t kill us, but it makes our lives painful and downright miserable at times!

Sorry I can’t be of more help. What we need is a medical research team that analyses the proteins, collagen in our capillaries to find out why they form aneurisms. Is anybody in the medical department at Mayo listening? We need to know what is wrong with the proteins, why this happens and then we may be able to figure out a way to improve the system. I have been in genetics research for 40 years and this is a genetics problem. Genetics, factor 5 Leyden, poor capillary structure and LV are all interrelated. Figure out the how and why and then you may have a good chance of finding a solution we who have LV can live with. We on this list would enjoy being able to walk again without the constant aggravating pain of LV!

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