LV treated with KI

Has anyone with LV tried Potassium Iodide to treat their disease.?
I'm new to this problem but the only paper I can find on the subject that claims to have had success, used KI.

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Is the LV you are talking about Livedoid Vasculopathy? If so, I've never heard of that approach. Worth some research, though.

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Yes, I am referring to Livedo Vasculopathy. I read a very short abstract on a case where Potassium Iodide was give to a sufferer in fairly large doses. They claimed full recovery in 4 weeks.
I haven't been able to obtain KI or I would have tried it.

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How long have you had LV? There are a few of us that have connected on other LV discussion sites. If you check the other discussions you can see some of the medications and procedures that we have all tried. Some of us are trying Danazol and Coumadin presently. Hoping and waiting to see if it works.

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Hi Dave I also have LV. If you type in Livedoid Vasculopathy into the find it I believe you will find other messages on LV and looking at the replies find several people with LV. Considering the rarity of the disease this is no mean feat to gather this much knowledge of the disease together. I have never heard of the use of potassium for LV. What does your Dr. think of it? Because of the resistance to treatment Researchers tend to cast around desperately for anything that might work . Some of the research trials have involved very small numbers of LV patients like only 2 studied for only 6 months and that hasn't been that helpful. How many people involved in the KL research and how long followed? Key to experimenting with a new Rx for LV is knowing if there are possible negative side effect to trying it. It is true that the trend among Drs. now is to treat with powerful anti-inflamatories like steroids Danazol and in my case prednisone and anti blood clotters Coumadin, pentoxifylline,dipyridamole,aspirin. you may friend request me on Inspire

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Sorry for the delay, I've been away.
I'm not a fan of firing synthetic drugs at something that is not understood. These drugs can't be design for a disease if it isn't understood.
The only abstract I could find that claimed a complete result was the KI, experiment and it has had not follow-up study. I think that is because KI is not patentable.
Has anyone had an ulcer go away?
Does another just reoccur?

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Hi Dave Since so few Drs. know LV I think its smart for us to try to learn from research. I know of 1 ot the roughly 23 different diseases that causes LV only 1 is due to vitamin deficiency,hyperhomocysteinemia,caused by lack of folic acid,B6,B12. It can be tested for. I'll try to forward you an article on causes of LV. I like to try to decipher medical research but computers eh I 'm not so good at. Are the KL vitamins considered synthetic? Is it 1 of those vitamins that are harmful in excess? Do you know others with LV in Australia? Are there Drs knowledgeable about LV? Usually in summer my ulcers go away warmth helps circulation and healing. Late August ragweed allergy always impairs healing and causes more ulcers. I have an unusual amount of allergy and auto immune disease promoting my LV. Some of us have no auto immune dysfunction at all. I know of 1 LVer who has kept ulcers away long term. If you get to know us you will find that everybody differs in progress of disease and possible causes. I do think together with Drs we are zeroing in on more effective treatments.

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I don't know anyone here with LV. The Dermatologists had never seen VL before. I feel like a paying side-show. Thats because I'm completely A-typical and it doesn't fit anything they know.

KI is potassium Iodide a salt of Potassium. It would be likely to have two effects, lowering blood pressure and improve thyroxin levels. Ask anyone from Detroit.

I went on holiday to the middle-east and India twice last year and I am still suspecting viral causation. Have you any history in that part of the world or any of your family, close to the time you first experienced the disease?

There must be a reason this problem is so painful. A Nerve association, must be a high probability. Mouth uclers are similar in this respect and they are thought to be nerve as well as virus related.

If we can collate data from persons with this problem, we can make serious cross references.
The people who usually now most about a disease are those with it (only my opinion). If you or anyone can suggest what questions to ask, I would love to hear.

I haven’t much faith in Drs or their methods. I just want to find the cause, fix it and move on. And hear other have relief too.

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HI Dave By my count there are about 7 inspire members who have LV or write for a family member with it. some I haven't heard from in a long time. Shall I ask them to send you a message?to share info. I have high blood pressure and underactive thyroid.I'll ask my derm this week if it's ok for me to try.KL. there is some experimentation in LV.Right now there is a trend among Mds to prescribe Coumadin to prevent blood clots and Danazol a steroid to decrease inflammation. trend started with the Mayo clinic. they are as close as we have to experts in LV. The immediate cause of the ulcers/scabs are blood clots in the capilliaries of the legs therefore the strong anti clotter. Major theory of cause is over active antibodies in blood create scar tissue/clots therefore steroids that calm down the auto immune system should help. several of us have seen good improvement with steroids not yet a cure. Steroid prednisone has helped me.I understand your caution about medical solutions.I've been mistreated by a few MD who did not recognize LV or bother to research it. Back to your ? on nerve pain I always suspected that the blood clots in the capilliaries damaged the nerves that run along side the small blood vessels but don't know. Interesting you brought up viruses. A healthy immune system responds to a virus attack with just the right amount of anti body activity. supposedly if attacked too often the auto immune system goes on permanent high alert attacking our own body parts. what do you think? tired now bye. J

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Hey Angelasmom and Dave,
Angelasmom and I found each other here on this group, which I am so grateful for because until then I felt I was the only one in the world with with LV.;-)) Now we have found what, 5 others with it Angleasmom??
I am always amazed at how you can retain all the info about LV,angelasmom!!.They have tried so many things on me that I have lost track of most of it sadly.I have it written down but I don't have instant recall like angleasmom ;-)))

Anyways Dave, I wanted to say "hey" and I thought I would share a little of my story as well... I have been suffering for over 4 years now with LV and not until about 10 months ago, did they eventually put a name to it and then that was because I had finally found a case study who showed pictures of a woman with LV and I forwarded the info to my doctor.

I'll skip all the treatments they tried and will tell you what I am on now for LV..About 4 months ago, the doctors started me on Danazol..I did not see a positive change for a few weeks but now I am so much better.I still get ulcers but they tend to stay on the smaller size and compared to what I was dealing with(HUGE massive ulcers covering my feet and lower legs) I can deal with the small ones. I am also on a antibiotic named Minocycline...I don't feel this has had the positive reaction to LV as the Danazol has but maybe together they have caused the postive reaction...??
Yes, I still have pain.....nerve pain is one of the most difficult to treat. I have tried all the narcotics and while I had massive amounts of ulcers there really wasn't anything that helped the pain.Also tried all the other meds that are suppose to help with nerve pain: Neurontin, Cymbalta etc but none helped me either.Only since the ulcers have healed a bit has my pain level gone down.Not away but definately better.
I was not a person who took any meds before this so I really had a hard time with having to take SO many meds but the LV was terrible too and I had to choose between the 2 and take the meds.
I am sorry you are fighting LV.....I always say when we find another with LV,, Glad to meet you and sad we have to meet this way.Hope getting info from other LV sufferers helps you.Take care

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It sounds like many people have this worse that I. I feel like a whiner, however we all want a solution.
Common illnesses must have a common cause. That’s my proposition and think its reasonable. I know its bold but if we find something common to all sufferers it could/would be a place to start a layman investigation.
• Some things are obviously genetic but , to my knowledge, no body in my family has had anything like this.
• I have no circulation problems but slightly raised blood pressure.
• My wife has thyroid problems but I have not been tested
• I’m a vegetarian, not vegan
• I have very dry skin and had eczema as a child
• I have had only 3 ulcers starting last February
• The ulcers had a black eschar . I found I could remove this scab with antacid.
• All blood tests showed normal results.
Do any of these points sound formiliar?

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My pathology came up negative and I guess that the case for most LV sufferers. Funny how antibiotics continue to get prescribed.
4 years with LV is not what I am looking forward too. I have read some persons have had it for over 20 yrs. That must be hell.
Maybe we can work something out with a DIY approach.

Cheers.

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Hi Dave I like your line of inquiry. Point by point. Nobody in my family has LV or any blood disease. Most of my family have autoimmune diseases. I have Graves thyroid disease, Raynaud's Syndrome,multi severe allergies and ? of Antiphospholipid Disease due to high anticardiolipid antibodies in my blood. Drs are always checking me for Lupus. Many with LV have no history of autoimmune dysfunction. Don't know what effect diet has. I have always struggled with digestion but all I do now is try eliminate salt increase fruit and veg. No skin problems as child. But now have trouble with dryness, coldness, skin tears and slow healing cuts in hands. LV is only supposed to cause clots below knees but I am deeply suspicious of it being related to circulation problems in other parts of body. My LV is also slow developing, at the most I have had 4 scabs mostly on left foot . Now only have 2 small areas. I wonder if my many anti coagulants aspirin,naproxen,pentoxyfilline,dipyridamole have slowed its development. Yep everybody has eschar/scabs. I found removing scabs did not help me. the wounds bled, hurt, got infected more and never closed on their own. My blood test were normal for nearly 3 yrs. before showing high antibodies.

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Hi Dave...
First, let me say that the antibiotics are a certain family(in the tetracycline family-doxycycline and now minocycline) are given for inflamation, not for infection although many of us have experienced an ulcer getting infected.

Also, yes SADLY members of our*group* have had LV for longer than I.we are trying to look at common traits but there really are none..OTHER than we don't know why we have it and that like you, no one in our families have LV.Some of us have narrowed the causes a bit but not definitely.For instance,I feel my LV stems from inflammation in my body...now WHY does it manifest into LV, I have not a clue.Others have vein issues,and another suspects autoimmune as relatives do have autoimmune diseases. I hope and pray, as I do for the others I am aware of that have LV, that the doctors will be able to help you...that even though they can't find*a cure* they can help you manage the disease.
It is a horrible, unpredictable disease.At this point I am better than I have been in the four years YET,I still get ulcers,& tender spots and with every new one a fear rises up in me that I will again have a terrible relapse ...Back in April I have a awful setback and both feet and lower legs were absolutely covered with ulcers.It was very bad.Even now,5 months later ,a bad one on my shin has yet to completely heal up.
Please keep me(us) informed.I wish you the best.

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Dave a while back 1 of us found an research article on antibiotic Doxycycline resolving wounds in 2 LVers. As is typical research followed them for only 6 mos. Researchers thought it worked because Doxy has mild anti inflammatory effect. Many of us tried it with Dr OK. Heck why not nothing else was working. After initial improvement some all of us relapsed with anti-biotic resistant infections that you get when on antibiotics for a prolonged period. I'm scared of anti-biotic resistant infections so many of my patients had them when I was a rehab therapist. I stopped Doxy and we found more effective anti inflamatories like prednisone and Danazol. Dave because I dealt so much with chronic disease in my patients I found it less shocking that I had a chronic disease myself in LV. We therapists tried to help our patients fight their diseases to a stand still, alleviate symptoms, function as fully in life as possible but we accepted that they would always be dealing in some way with the disease if only to keep it in remission. Some of us have taken that tack. If non prescription drug therapies like vitamins, diets,alternative medecines are found to be helpful I will be delighted but right now anti inflamatories are helping too much for me to want to give them up.

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I also wanted to add that I am open to alternative treatments but of course most docs here are not so, it makes it tricky and maybe even risky as they may interfere with more traditional meds. I went 3 years before a diagnosis of LV was given ,so I had tried MANY alternative treatments and while there may have been some initial improvement, I ended up in the same boat in the end..Lots of pain and many many ulcers.Right now in addition to my list of meds from the dermatologist I am being treated with for LV, I do take good multivitamins and additional vitamins like c and d.I don't see how they can do any harm. As angelasmom said,anti inflamatories are the only thing so far that has made any difference in my symptoms.Which I am so very grateful for ;-))))

Take care....

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If I have offended your efforts to investigate the problem, I am sorry.

It would be helpful to me if I knew what has been tried and the observations. Then I can tick the items of my list that are futile. Your experience is useful as I don’t want to inflict aggravation when its not going to help. Worse still if something makes condition decline.

I cut the first eschar off with a sterile box cutter. It hurt like hell but the sore healed. 3 weeks later my ankle went red and then black. I thought I had leprosy. The doctor said he hadn’t any time for a week and a half. The pain was as bad as the box cutter and it progressed daily. After protesting the GP saw me and said he have not idea what I have but I should be careful. At the dermatologist I was given the diagnosis of having VL and instructed to return in a month. The store became self help or no help. So medicos aren’t top of my respect list.
Now, I have much less pain but no solution. My chemistry background has allowed me to study the function of every vitamin and trace cat ion. The result is suspicion of every metabolic process and no definitive culprit. I keep coming back to virus not autoimmune because it would show up elsewhere. This is isolated to the lower leg.

I once had a rash on my feet, that progressed to my ankle and then slowly to my knees. It looked like my whole body would be consumed. Mum took me to the doc and he prescribed steroid cream. The rash progressed but there was some relief from the itching. The solution was much simpler than the GP could have imagined. There were smelly weeds growing aside a path a jogged along. As the weeds grew so did my rash progress. I put 2 and 2 together, cut down the weeds and the problem was solved.

VL could be that simple.

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Oh my Dave you are certainly not offensive. We all have been terribly puzzled by Livedoid Vasculopathy. We all have been terribly frustrated by MDs. who did not know much about LV. The 2 yrs of trying to get a correct Diagnoses were full of Drs. mucking around cutting off scars causing infections and a lot of pain. I am happy now to show every new Dr. in wound clinic my wounds and how to recognize LV I know how few Derms can diagnose it. I think your interest in science and inquiry will serve you well. You know circulation to legs and feet is not as good as the rest of the body. The circulatory system has to work harder to pump blood up from the feet particularly the left leg. I always noticed this in my patients with any disease of the circulatory system. So blood in the whole body can have a defect and it will show up in legs first. I don't think LV has just one cause. Feel free to disagree! Gosh knows nobody knows everything about LV. We find none of our small group are exactly alike in progress of disease,disease history or response to therapies. I have much more auto immune dysfunction than anyone else I know. Another of us had venous insufficiency and vein surgery decreased her wounds apparently for some time. I have normal veins and have been assured they play no part in my wounds. My son says I can forward Dr Shamugams article on causes of LV if you friend me on Inspire but I can't seem to post it in replies. I'd be interested in what you think.

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Hi all. 'm amazed to finally find someone else that has this malady. I am being treated at NYU Medical Center by Dr. Franks. It took me years to find someone to treat this. Even though he is knowledgeable, he has not cured me. I find that swimming helps, but of course, it can not be done when there are open sores. Has anyone found Lyrica to help with the pain? I started it, but don't find it does much. Weight gain is a side effect, and since I have to spend so much time on the couch with my feet elevated, I hate to take it and have a weight problem on top of the other problems. And I'm sure the extra weight would be bad on the ankles where all the sores and swelling are.

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Hi Patricia nice you added to discussion. Yes we LVers are few and far between. I've never met another with LV and if not for Inspire I would never have ever heard from anyone else with it. Few Drs are familiar I'm glad you've got one. What kind of treatment are you on? I'm on strong anti-inflammatories danazol and prednisone, Anti blood clotters aspirin,dipyridamole,pentoxifylline, auto-immune system suppressants hydrochloroquine. A combo of anti-inflamatories and anti clotters are the trend now for LV. Oh it would be wonderful to go swimming again! I have not been for a yr. due to an open wound and I love the beach. I think weight gain is a worry for many of the LV women. Not only does danazol increase water weight but many of the simple activities that would burn calories like walking hurt. Pain relief is another whole puzzle. I take very little for pain mostly just a Naproxen daily some acetaminophen when that doesn't work and to a large extent I use crutches for stairs and out of house,wheelchair for long distances as my pain control. Stronger pain meds have been discouraging. Neurontin puts me to sleep as does vicodin. I have an allergic reaction to Darvocet. And they only work when resting not if I walk. What good is that! I won't take anything that interferes with driving. I'm a mom I have to ferry kids. Scared of the habit forming drugs too. Only thing I found that really works for pain is decreasing the wounds. Would like to hear more of your LV history and how you're coping. J

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Daverocks I want to ask you because I think I'm seeing a trend. Here in North America all the Lvers I've heard of come from the northern US and Canada. The farthest south Virginia. I've spoken to a 78yr. old in Florida but like most elderly in Fla. I believe she was born in northern US. I will ask her further. There some diseases that are more frequent in certain climates or latitudes. Ex. Multiple Sclerosis an auto-immune disease is more common in northern latitudes. Are you in a far southern latitude or in the tropic part of Australia? Do you think that observation is off the wall?

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