Wednesday, March 10, 2010

In Which I Malfunction

My immune system just isn't working right anymore. 

That is abundantly clear to me, considering all that I've had happen recently pertaining to my supposed allergies and whatnot. I'm beginning to see similarities between my immune system and Toyota, where you start out thinking it's going to be reliable no matter what, nothing to worry about... but then all of a sudden, shit just falls apart. There is no manufacturer warranty for me, though (I've checked), so I can't just pull into my local service station and have them swap out the faulty parts. Instead we've got to do a bunch of tests and wait to see what happens. 

I mentioned a little while ago that my allergist had me do some blood tests to learn a little more about what is going on. The results came back in about a week later, but I didn't get a chance to sit down with my doctor and discuss them until last week. He had left me a voicemail letting me know it wasn't anything serious as he had previously speculated, but there was still things we needed to talk about. 

At my appointment last week, he sat me down and talked over the results a bit more in depth. He had tested me for liver disease, thyroid disease, and lupus. I tested negative for all three, which is good, but some of the other tests came back with some elevated protein levels. He explained it all to me very carefully what that indicates, and then told me his diagnosis.

I have Immune Complex Disease. 

Basically, whenever my immune system encounters something foreign (like a virus or bacteria or an infection), it attaches to it an antibody to fight it. An antigen binds itself to the antibody, and instead of flushing itself out of the body like it is supposed to do in a normally operating immune system, the antibody/antigen cluster attaches itself to various parts of the body. Over time, since they are not eliminated from the system, these clusters build up. This causes a rise in certain proteins, which in turn can trigger an automatic response from whatever part of the body it's attached to. It's a big chain reaction, and the symptoms I'd have from this can closely mimic normal allergy symptoms. 

I did a fair amount of research after my appointment to make sure I fully understood everything my doctor told me. He told me that what I have is not lupus, since I tested negative for it in the blood work, but it acts very similar to it. In what I read additionally about Immune Complex Disease, it is often a main feature of autoimmune conditions, such as lupus. So it's not exactly lupus, but it's close. 

Here is where I get confused. It's like being told I am an orange, but I don't make orange juice. 

I trust my doctor when he says that I don't have lupus. I just have to wonder if there is anything else to what I have, because when I look at all the other symptoms I've been fighting over the past couple years (neurological, physical, and emotional), they each fall neatly into their own category where a diagnosis of lupus would seem to fit. I'm trying my best to not read into it, to be subjective with the information I read about it, but that only goes so far. The black-and-white logic my mind runs on has a hard time accepting that it still isn't what it seems to be, despite all of the signs pointing directly at it. 

At any rate, what this all means is that I'll likely be on some sort of antihistamine regimen on a long-term basis. I'll need to be careful with what I expose myself to, to make sure I don't get sick or take any unneeded risks. Even an infected cut or sore could cause a problem, and I'll need to ramp up my medication during cold and flu season. If my symptoms persist through the medication, I may need to go back on steroids as well, but I'm hoping it doesn't come to that. 

I'm glad to at least have more of a game plan again, even if I don't completely understand it. I really do trust my allergist, but even he himself said that this diagnosis is tough to pinpoint. I have some more tests to run, and maybe we'll know more from that. 

It's always something, I tell you. 

Always something. 


Kerri said...

House M.D would be able to solve this!
Seriously though, sorry you are going through so much shit :(

Sandy said...

That sucks. I am always impressed by how well you understand such things. I think I'm pretty smart and know some about medical issues but I couldn never evaluate as you do.

Hopefully the information will give you some peace of mind and maybe find some options going forward. Take care.

Feral Female said...

Sorry to hear you`re going through so much Geek. Take care!

...Gabby? said...

Your humorous presentation in a rather matter-of-fact tone (albeit as charming as ever) still reveals the complicated emotional responses you must be cycling through with this diagnosis. Courage, my far-away blog-friend. If it's *not* lupus, man, I'd go with that and run with whatever it *is* in the best way you can.

Sending you all good vibes for well-being!

Moonspun said...

Oh wow...that's an interesting analogy, you are an orange, but can't make orange juice. But you don't want it to be lupus, right? it's just that you want to KNOW. At least you have more information now and that makes a difference I am sure. Hang in though, you are a geek and therefore tough. No wait, or is it you are baddass and therefore tough? :-)

Mystern said...

Well, I don't know all that much about disease, but I do know that sounds pretty bad. I'm sorry to hear about your troubles, and I'd offer you a nice manly hug, but I think Marque would be more comfortable to hug. She has more soft parts ;)

Shonassie said...

Just my opinion, but I think you should consult a homeopathic doctor as well. I have a friend who has Lupus and her regular doctor could not battle it alone. Even though it's not true Lupus, if it walks like a duck and quacks like a duck.... It's probably a pre-Lupus and will develop into it if not managed.

A homeopathic doctor can help you cleanse your system and purge impurities that are ravaging your immune system. Steroids and Antibiotics are ok in a crisis, but depending on them will eventually compromise your immune system even more. My daugtherwas a victim of antibiotic/steroid poisoning and after a lot of work, whe is slowly recovering. Ask the homeopathic doctor about Kyo/Chlorella and Astragulus root. As long as you are not allergic to them, they can really help build your immune system. BTW, Homeopathic Drs. and Regular MD's can work together to help patients. If either one of your doctors won't play well together, don't get stuck in the middle, look for another one to replace the one that can't share. You really need both types of doctor to fight this and stay well. Good Luck!!

BeautifulWreck said...

No advice. Just empathize with the pain in the ass it all is for you.

Melissa said...

That makes no sense to me either Badass. I have to agree with you. Immune Complex Disease is a TYPE of disease. Like you said, like Lupus, Rheumatoid Arthritis, etc. My sister has the RA so I know a bit about it. Your doctor just doesnt have a diagnoses. He has figured you have a type of Immune Complex Disease but he cant figure out what it is my thought on that.

Good Luck!

Nej said...

Crap. :-(

Just continue to stay strong...and they'll get it all figured out. I have no doubt.

Chibi Jeebs said...

So you have an answer... sort of. :( Boo. I'm sorry he wasn't able to give you a more definitive answer/action plan.

We swear by Cold-FX. It's a little pricey, but neither one of us get sick anywhere near as much as we used to (and for me, it was a lot and badly - every cold morphed into a sinus infection and/or strep throat). I'm pretty sure it's not for sale down there, but you might be able to order it online. I just noticed they have an Immunity-FX, but I have experience with that one.

Lily Ruth's Mama said...

my 2 cents - ask your doctor if Lymphatic Drainage is something that you might benefit from. My LD training is in the very beginning stages, but I have seen great results for clients. It is non-invasive, very light body work that moves the lymph throughout the body faster than usual. This hopefully helps to remove blockages (maybe like the clusters you've been getting) and boosts the immune system. My initial thought is that this couldn't hurt, but I would still ask your doctor before trying it. You can check the Upledger Institute website for practitioners in your area, and more info on the therapy.

Juliette said...

I wish you the best of health and I hope things get better!

It's interesting because we're learning about the immune system in my biology class this week.
So weird, huh?

Anyway, stay strong!


Mwa said...

That's really crappy. I hope you're going to feel better at least with the medication. xx

Dylan Murphy said...

I would agree that House could solve the problem...but not without 13's help.

Christina In Wonderland said...

Well that sucks! I hope it all works out for you in the end. And, meh, being on medications for a long term commitment isn't so bad. Eventually, it becomes habitual, like breathing or sex. :/

carissajade said...

It IS always something isn't it!? I'm really sorry that you are having to endure this, and I hope in the long run you start to feel better!

girlvaughn said...

you know, It really IS always something. A few years ago they thought I might have MS (based on some weird MRI results) and so I had a spinal tap and every blood test know to man. They basically couldn't figure it out and told me I had something called "benign angiopathy" - which is also some kind of central nervous/immune thing that I was never able to find much info on so I decided it was made up.

I am ALWAYS sick or allergies or in some kind of pain. It really gets old and depressing.

I just went to the wacky holistic doctor and we're going to do some IV drip homeopathic treatment for a few weeks. Hoping it works.

I really hope everything works out for you and you feel better.

Jen said...

Whatever it is I hope you can get it under control without too much disruption to your life.

Aunt Becky said...

Aw, dude. That sucks. I'm sorry. Hang in there.

TechnoBabe said...

Hopefully it is as straightforward as the doctor says. And now that he has the test results it should be real soon that you are feeling better.
It always sounded like allergy problems when you described how you were feeling. Hope it gets better soon.

Mad Woman said...

Guh. I can't believe you have to go through so much crap. That sucks dude. I wish they could give you something more definitive than "it's like Lupus ..but not". It's like a total psyche out.

Badass Geek said...

To All: Thank you all for your support. I know we'll figure it out eventually, it's just the waiting that makes it difficult. I'm no stranger to waiting it out, but that doesn't mean it's any easier this time.

I appreciate all of your suggestions and thoughts regarding this situation. I will look into all of them to see if they might help. At this point, I'll try just about anything.

Anonymous said...

I completely know what you are going through as I am going through things that have the doctors wondering what it could be. Just when they think they know what it could be, an exam result comes back funny and that leads to a whole new round of crap. At least you have a plan of action now... hope I get one too.
Take care and fight hard

LucyCooper said...

Buddy, I am so glad it's nor lupus. I know you're still adjusting to the news though. Having any chronic condition is no bueno. My mom has had some very similar symptoms and issues, but hers ended up being a lot of allergies to foods and chemicals. She's managed beautifully, though, and I know you will too.

Mama's Girl Alexis said...

Everything will work and dont think of the negative. It is great that it is not Lupus.
Don't always feel like something is always happening or if it isn't one thing it is another. No need to keep that frame of mind thinking. It is only negative and dull to think that way.

It will be fine and have more of an understanding soon..

Feel better soon !

Elly Lou said...

Aw muffin! Hugs. Supportive and totally non-gropey hugs.

Aunt Juicebox said...

You do have to wonder if everything you've been through is connected.

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