Multicentric Castleman's Disease

[BellaBellucci]

This feels like coming out all over again. It's actually surreal. Although, I'm on a lot of drugs so, you know - pointless philosophical debates with myself over morning coffee, spacing out at meetings, stumbling around because my motor skills are failing - perfectly normal now. Hunter S. Thompson can eat his heart out. In fact, I'd add yet another drug to my regimen to hallucinate that.

I don't have any energy. Despite 2-3 cups of coffee in the morning, a Norco, and a host of vitamins, I usually pass out every afternoon only a couple of hours I wake up, only to wake up to eat dinner and fight to stay awake until my normal bedtime. I live in constant body-wide pain, weakness, dizziness, short breath, trouble concentrating, have lost over 30 pounds, and oh yeah - the loveliest part - I've lost most of my hair to telogen effluvium, which means that it will grow back eventually, but right now I essentially only have one of three phases of hair grown out.

It started with swollen lymph nodes in my right-side groin area last spring. They didn't hurt much and they weren't hard, so I knew I didn't have lymphoma. Naturally, the doctors (yes, plural), knowing that I was trans, assumed it was an STI. Negative tests and two courses of antibiotics later, my primary care doctor didn't know what to tell me. Knowing that a lymph node's reaction after antibiotics can sometimes take months, I thought nothing of it until they started swelling on my left side as well.

Since going to a new doctor starting in January, I have been poked, prodded, made radioactive and scanned, and had my case reviewed by the NIH. Yeah. As in the CDC of non-infectious and rare diseases. After a biopsy, it is nearly conclusive. I expect an official diagnosis next week, but it seems that I have MCD.

What is it, how is it transmitted, and how can you protect yourself? Put most simply, it's a lot like lymphoma except that instead of promoting cancer cell production, Castleman's overproduces white blood cells - so it's autoimmune.
Here's the catch, though: MOST people who get this disease do not get it randomly as I did, but by RIMMING. Yes. Rimming. Humanherpes-virus 8 is in saliva, and is easily absorbed by the anus, and HIV has been largely linked to the disease. The best way to protect yourself is to use condoms, dental dams, and other prophylactics.

Look, MCD is no joke. We're talking a three-year survival rate of 46% - less than 50/50 odds - and they haven't even let me start treatment yet after 16 months. Five years ago, the life expectancy for MCD was only TWO YEARS. Even stranger? My symptoms are about 20 years ahead of schedule for a person not presenting with an STI.

There are treatments that can help me, some which may even put the disease into remission, but most are experimental or new to the market. They could put me on chemo. One treatment, as unthinkable as is seems, is actually THALIDOMIDE. Not pleasant stuff. And then there's the possibility that nothing works. It all depends on the person - and this disease is so rare that there is little data... or moral support... to help them (read: me) sleep at night - but again, I have drugs for that.

So anywho, I hope this post serves the dual-purpose of explaining my absence and educating others about a hidden danger out there in the industry. Sorry to bore you all with my depressing details, but I sort of see an opportunity to help people here, and I've never been one to pass those up - even if no good deed goes unpunished - I SWEAR (LOL)!

I may dedicate a section of my personal website bellabellucci.com to this topic, depending on my energy levels, but I will absolutely answer any questions that I can in the comments. If you'd prefer to send me a private message, you can email me at bellabellucci@ymail.com.

Thanks for reading, everyone!

~BB~

[jamesedwards]

Well, thanks for the heads up. So you think this is an porn industry thing? I hope you get better.

[BellaBellucci]

Well, thanks for the heads up. So you think this is an porn industry thing? I hope you get better.

Nope. Ironically, this has nothing to do with my experience in the porn industry. My STI slate is absolutely clean. That's what makes my case even that much more rare. The point of my post was to educate others that HHV-8 and/or HIV are generally present in Castleman's patients.

~BB~

[jamesedwards]

Nope. Ironically, this has nothing to do with my experience in the porn industry. My STI slate is absolutely clean. That's what makes my case even that much more rare. The point of my post was to educate others that HHV-8 and/or HIV are generally present in Castleman's patients.

~BB~

Oh ok, thanks for the info.

[jamesedwards]

So do you still talk freaky about fucking to cheer yourself up Bella?

[BellaBellucci]

So do you still talk freaky about fucking to cheer yourself up Bella?

Yep. Especially when I get paid for it. But I'm not here to advertise.

~BB~

PS: MCD does not alter my twisted sense of humor. Js.

[jamesedwards]

Yep. Especially when I get paid for it. But I'm not here to advertise.

~BB~

PS: MCD does not alter my twisted sense of humor. Js.

Ok, cool, good to see you in high spirits.

[youngblood61]

Thanks for the education Bella.

[CORVETTEDUDE]

Your experience will hopefully be valuable to anyone intelligent enough to understand the gravity of your situation. I pray for you Bella, that an effective treatment for your circumstances is formulated quickly. You ROCK for putting yourself out there!!

[maxpower]

I'm glad to see you back, Bella, although I wish the circumstances were more positive. Here's hoping you find a treatment that works well for you.