Back from the Doctor, Skin Infection Update

[Intexas2stay]

Well, I went to my doctor first thing this morning. He gave me no real answers. He didn't really think it is staph. He gave me antibiotics just in case.

It is a good thing that I already have a hematologist, due to my blood clotting disorder. My primary doc. thinks I have something called Porphyria Cutanea Tardia. Say that 10 times fast!!! From what I read so far, Porphyria is actually a group of disorders, ranging from the skin to life threatening conditions. Its very rare.... VERY!!! Has something to do with enzymes in the blood. So its off to the hematologist in the morning for yet more tests. Seems if I do have it, just the skin being affected, treatment is removing a pint of blood a week to the point of anemia, to lower the iron level in my blood.

This condition actually adds up more to my medical history, including relatives conditions. (seizures-sister, blocked intestine-sister and grandmother, mental and pain disorders-mother) My depression could be caused by it, my stomach ailments, anxiety, insomnia, strange urine, not so regular bowels.... Man this is depressing!!!!! Why do I have to have the strange unusual diseases pinned on me? LOL And to think I had a good bloodline!!!

Stupid Doctor didnt give anything for the pain and itching, said to put lotion on my body. If I heat up, such as going outside, I itch like crazy. I was squirming all over the examining table with the itchies. My research did say that sunlight can cause the skin outbreaks. Which is why I have sores on face arms and legs, but not on areas not exposed to sun.

What REALLY worries me is my hematologist is testing me for Lupus. My research did turn up mentions of Lupus with this condition. Back to WebMD.

 

[txminipinto]

Hey, don't get overly worried about Lupus. I went in to the dr. this time last year with swollen lymph nodes (I joked that I had strangles) and they tested me for Lupus. Glad you're getting answers!

 

[Intexas2stay]

Thanks minipinto! I will try to quit stressing. I am lucky that my hematologist can see me tomorrow, and we can get to testing again> He tested me up the yin yang 3 weeks ago, so maybe he already has an answer waiting for me... Breathe.....In and out slowly...

 

[Charlene]

be careful reading about this stuff online. when i was doing kidney cancer research, i found SO much information that was outdated and totally obsolete and many times, i was steered in the wrong direction. a little knowledge is a good thing but you can get overwhelmed very quickly.

sounds like your docs are stepping right up to the plate, yayy for them! you'll be in my thoughts and prayers. i can relate to the itchies...one single skeeter bite almost puts me out of commission for 2 weeks!

 

[chandab]

For the itching, you might try "Sarna lotion", if you haven't already (it OTC, so shouldn't be too hard to find). It has done wonders to stop the itching bug bites cause me; when benadryl cream, other anti-histamine creams, cortizone cream, etc wouldn't stop the itching.

 

[Pepipony]

While searching, look at Ehrlichia or Ehrlichiosis. Its a bacterial infection that can cause lupus looking rashes and a sun inflamed Rash. I dealt with it for years untill I had a Dr actually stop, look and listen. Good luck!

 

[laughingllama75]

I am so glad you went to Dr's first thing. I am sorry it is not a simple fix......I hope they figure it out soon for you. I will keep you in my thoughts.

 

[Sue_C.]

One of my sister-in-laws has Porphyria, and it certainly isn't a kind disease. She must have constant blood transfusions. They tried putting stints in so she wouldn't have to constantly get new IV's all the time as her veins are pretty used-up...but she had to have them removed due to infections.

Here's hoping they are wrong on this.

 

[Wee Mite Miniatures]

My dad has this, has had it for years. I really have to go talk to him since ----- he no longer has the blood transfusions. All I can remember is that back 20 something years ago when he had his triple by pass he was started on a new medication for it and since then he has not had transfusions. Way back then I remember him saying he case was written up in a medical journal since he was one of the first having the transfusions. There are several types of Porphyria. His is inherited, in can skip generations. Both my dad and his sister had it.

Most Doctors did not even know what this was back when he was first having problems. He was told lupus by most of them. It did cause a lot of problems for him. Big blisters, heart problems, not being able to go out in the sun, no green veggies. His first heart attack at 42, a triple by pass at 58. Then he started on a medication and he has led a very normal life since then. He is now in his 80's.

 

[Sue_C.]

None of the meds have worked for my sister-in-law...let's hope that soon there will be one that will. it sure does drag her down, but she doesn't let it GET her down.

 

[Intexas2stay]

I am heading off to the hematologist. He will I hope have some answers for me when I get there, as he has been testing me lately. Updats yall as I can. Thanks for the advice and prayers. I couldnt ask for a better bunch of people to get to complain to.