Discussions By Condition: I cannot get a diagnosis.

Possible Rare Disease Or Mixture Of Diseases? Help Please

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: trackhead26
  • September 12, 2007
  • 07:07 PM

When you first hear the symptoms you will start to think its Herpes but as I continue you will see why it is unlikely. I'll start with the symptoms: Sores in various places, the ones on the penis start as what looks like acne, a group of about 6 bumps filled with a watery liquid. When they pop they turn into an ulceration which spreads over the head of the penis and even along the base sometimes. Ulcerations beging to appear inside my mouth, they do not start as blisters and look like canker sores. These sores affect the inside lining of the cheeks, and even my throat and tongue. They move on to my lips and at the worse have completely removed all the skin from my top and bottom lip until eventually crust over. I also get anal sores at the same time and blisters with a dark in the center appear anywhere on my body, on my hands, my arms my feet even on my chest and one time right in the corner of my eye. A couple of doctors have thought that it could be Bechet's Disease but there is no straight out test for that. The first time it happened about 2 years ago, I was first given acyclovir which did nothing and then I was given valtrax and it still continued to get worse. Finally I was admitted into the hospital s I was unable to eat or drink due to the pain from all the ulcerations in my mouth along with no skin being on my lips. They gave me a saline solution and antibiotics for 3 days until my lips started to crust over and I was able to eat soft foods again. They were unable to tell me what caused it. The blisters on my skin gradually skrink down and disappear leaving a dark brown scar. My lips eventually regrow skin as well as my penis which loses the majority of its skin on the head. There is no pain from urinating except that caused by the urine touching the open skin on the outside. Pus does seem to come out of the open wounds. Any insight would be nice, I would like to know what this thing is. I'm 27 years old and african american, born in NC and raised in NY. I've never been out of the country. I'm married and whatever it is it isn't contagious as my wife has never been affected by it.

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  • I do not know what this might be, but for your own peace of mind, I suggest you be tested for all STDs. Some of them can be asymptomatic for a long time, particularly in men. Some yeast and fungal infections can cause some of the symptoms you describe. Ask your doctor for a comprehensive blood test including STDs and also for a urine culture and yeast test. I hope they find out what is wrong very soon. There is no test for men for HPV virus, which can cause genital warts and sometimes spread to other parts of the body. There is a test for women, which your wife could have along with a Pap smear.You have my greatest sympathy. I am going through all kinds of tests right now. I have only had one partner and am in a longterm relationship, but I was just diagnosed with HPV. If either of you have ever been active with anyone other than each other, even many years ago...get all the tests.If you have an STD of some kind it is no bad reflection on your character or your life. Find out, for both your sakes. A few of them can be transmitted in non sexual ways. It is just not possible to know what you might have been exposed to. You might want to be tested for resistant staph also. You've been in the hospital and staph infections from hospitals are common. I have requested a retest for it, on the advice of someone here.Think of it this way, a few tubes of blood and at least you will know what you do not have.
    BesideMyself 41 Replies
    • September 12, 2007
    • 10:58 PM
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  • Pemphigus is an autoimmune disorder that causes blistering and raw sores on skin and mucous membranes. As with other autoimmune disorders, it is caused when the body's defenses mistake its own tissues as foreign, and attack the cells. This particular autoimmune reaction is sometimes associated with the use of Penicillamine. Maybe?
    rad-skw 1605 Replies
    • September 13, 2007
    • 08:35 AM
    • 0
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  • I do not know what this might be, but for your own peace of mind, I suggest you be tested for all STDs. Some of them can be asymptomatic for a long time, particularly in men. Some yeast and fungal infections can cause some of the symptoms you describe. Ask your doctor for a comprehensive blood test including STDs and also for a urine culture and yeast test. I hope they find out what is wrong very soon. There is no test for men for HPV virus, which can cause genital warts and sometimes spread to other parts of the body. There is a test for women, which your wife could have along with a Pap smear. You have my greatest sympathy. I am going through all kinds of tests right now. I have only had one partner and am in a longterm relationship, but I was just diagnosed with HPV. If either of you have ever been active with anyone other than each other, even many years ago...get all the tests. If you have an STD of some kind it is no bad reflection on your character or your life. Find out, for both your sakes. A few of them can be transmitted in non sexual ways. It is just not possible to know what you might have been exposed to. You might want to be tested for resistant staph also. You've been in the hospital and staph infections from hospitals are common. I have requested a retest for it, on the advice of someone here.Think of it this way, a few tubes of blood and at least you will know what you do not have. Actually, I was tested for everything while I was in the hospital, they even did a throat and urine culture and tested a swab of the inside of the penis. Everything came back negative. I've been a blood donor for about two years. I'd be happier if they said you have xyz disease, as opposed to you're negative for everything and we have no clue what's wrong. It was flaring up every 6 months but recently that shortened to 3 months and I'm currently beginning to heal again after it showed up just a month since the last time.
    trackhead26 1 Replies
    • September 13, 2007
    • 00:19 PM
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  • Reiter's Syndrome?
    aquila 1263 Replies
    • September 13, 2007
    • 03:58 PM
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  • At the rate disease is evolving, chances are a doc hasn't recognized it as an illness they are familiar with. No worries, soon enough a doctor will be naming it after him/herself when they realize that this virus or group of symptoms has not yet been discovered.Give it time.In the mean time, it is obviously "viral"in nature.. I highly suggest NAET/Bioset therapy as a way to deal with symptoms. Something is obviously amiss and allopathic medicine doesn't have answers. I was in the same boat...many symptoms, no answers.This forum is where I found helpSomeone recommended this to me and out of desperation I went. Try the first three treatments and see if it helps. If not, you will continue to spend time and money on doctors who remain puzzled and offer no real help in getting to the root of the problem. Best regards and I hope you are feeling better soon...mommy cat
    mommy cat 1654 Replies
    • September 13, 2007
    • 05:51 PM
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  • Sounds like syphilis? It has been called the great imitator, and is often misdiagnosed. They would need to have done some very specific lab tests for this...serological tests often yield a negative result. This disease is caused by a spirochete, and antiviral meds won't touch it. Penecillin is the drug of choice. Have they done a biopsy? Have you ever been diagnosed or treated for gonorrhea in the past? If so, this treatment can mask or delay signs of syphilis. Sometimes these two STD's occur at the same time. Secondary syphilis signs can include the coppery brown spots you are describing. Please do some research on this and make sure they do some thorough testing. Best wishesDOM
    acuann 3080 Replies
    • September 13, 2007
    • 07:06 PM
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  • Please don't donate any more blood till you are cured. Thanks
    rad-skw 1605 Replies
    • September 14, 2007
    • 10:35 AM
    • 0
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  • Yes! Please don't donate your blood...whatever you have is in your blood. I just wouldn't take this chance of infecting others... Best wishesDOM
    acuann 3080 Replies
    • September 14, 2007
    • 02:03 PM
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