Re: Hair loss and Crossover Diseases

[Guest guest]

,

It's difficult not to become preoccupied with the possibility of crossover

diseases. I wish no doctor had ever suggested Lupus to me. The suggestion

has been planted and then there are all of those unexplained medical

incidents.

Last week I learned for the first time that Scripps had tested me for

Epstein-Barr virus (the virus that causes mononucleaosis, among other

things) and I learned that I tested positive. I looked it up on Internet

and sure enough, EBV can cause liver inflammation. I set the thought aside

so I could talk to someone about this then tonight I read an article in

" Hopkins Health Insider " , a newsletter I receive but rarely read. The

article says that 90 percent of Americans older than 35 carry antibodies

for EBV, meaning they were infected with it. The article says that adult

mono may include liver inflammation. This is why adult mono is often

mistaken for gallbladder problems, hepatitis, HIV and other conditions.

I had a horrible thought. Maybe that's all I ever had. Liver inflammation

from EBV. And maybe everything that's happened since has been caused by the

medication. Of course, that doesn't answer my questions about why I had

other AIH symptoms, but it certainly could skew lab tests. My next thought

was that ongoing liver inflammation from any cause would surely eventually

result in cirrhosis, and I question whether the lab tests are all simply an

indicator of the inflammation and nothing more. Certainly, EBV has been

ruled out and AIH confirmed? But I would like to have someone tell me that

officially.

See what I mean? Those kinds of thought patterns are called " processing " .

It's easy to get caught up in the " what if? " aspect of things. Now, if I

had a doctor who wasn't always in such a hurry to get out the door when he

sees me, I'd ask him about all of this. Maybe it's denial, but it's a

horrible possibility... or maybe it's not. The article says that symptoms

of mono in adults can vary so much that it can baffle even experienced

clinicians (and I hope all of us are seeing " experienced " clinicians.)

The bumps on my scalp come and go. All it usually takes to get rid of them

is a shampoo, which leads me to believe that they have a cause similar to

whatever causes the light rashes I get. Allergic to my own perspiration.

My hair's very dry but I use a conditioner and rarely go a day without

shampooing. When I start to " shed " nothing I do seems to make a difference.

The biopsy sounds like a good idea for you. You have to know one way or

the other what is causing your labs abnormalities. If you're like me, you

can handle negative news better than not knowing at all. Wouldn't it be

great if losing weight is all it takes to magically become well again? I

don't know how it works for Lupus, but at least in my situation, there is

fluid retention all over my body, it's just more obvious in my feet and

ankles. So, losing weight would definitely help and the doctor needs to

tell you what to do to get rid of the fluid that's causing the increased

weight, if there's anything you CAN do.

Sometimes pred is so much better than the alternatives, the side effects

become almost irrelevant.

Take care,

Geri