Friday, July 25, 2008

The Dreaded Genotype

I got some test results back bringing with them more bad news. One of the tests is called an HLA DRB, DQB Typing. It's one of the tests they do for transplant patients and doctors are finding it useful for dealing with chronic illness. It's also used to indicate disease severity.

I have the dreaded combination of a certain genotype along with low MSH levels meaning at the most basic level that it's going to be really really hard to get well. In fact my body cannot effectively eliminate toxins on its own. There are certain genetic susceptibilities that some people have towards mold, lyme, and other toxins. Some people have no susceptibility, others have some towards just mold or just lyme while others, like myself are what's called "multi-susceptible." It's literally called the dreaded genotype. There is a medication that can help eliminate toxins called cholestyramine but it's not a guarantee.

MSH is an anti-inflammatory, regulatory hormone made in the hypothalamus. It controls the production of hormones, modulates the immune system, and controls nerve function too. MSH deficiency causes chronic fatigue and chronic pain. Any illness that begins with excessive production of pro- inflammatory cytokines will usually cause MSH deficiency. This is the basic mechanism that underlies damage caused by exposure to biologically produced toxins neurotoxins (biotoxins) made by invertebrate organisms, including fungi (molds), dino- flagellates (ciguatera and Pfiesteria), spirochetes (Lyme disease), blue-green algae (Cylindrospermopsis in Florida and Microcystis all over the world) and bacteria, like anthrax.

An MSH level below 35 is consider low. Mine is 12.

My neutrophils are high, while other white blood cell counts remain low. My red blood cells are doing something that I don't understand. Maybe I was just dehydrated that day.

Two other tests MMP-9 and C4a levels were high normal so that means the inflammation in my body isn't horribly bad.

I had the CD57 panel done which is related to lyme and one's ability or tendency to relapse. I don't quite understand the numbers but basically they don't look too bad so I'm thinking that I was probably bit last year while in Guernville. I think if the levels were much lower (they were low but not terribly so) it would have indicated a more longer term lyme infection.

Now I'm just waiting for the babesia test results. I speak to my doctor on 8/6. I wish it were sooner. I'd like to go over the test results with him.

A bomb exploded in my body wreaking havoc in it. There's a lot of work to be done.

I'm still feeling piss poor and the heart palpitations, weird chest pressure, and dizziness are all back. They are all symptomatic of lyme so it could be part of the herxing. Or maybe I'm going to drop dead of a heart attack soon. Who the hell knows anymore? My acupuncturist kept making these veiled hints about heart attacks which always freaked me out.

Speaking of. I had given up on getting a returned phone call from them but they left a message on my cell phone saying something like " there is information that John really wants you to know about your treatment." Given everything that's been going on with me a message like this kind of freaks me out so I called back. I got a promise I would receive a returned phone call today. Nothing. I realize I don't want any information from them anymore. He's had too much power in my psyche and listening to him got me nothing but more ill.

Last night I dreamt about Lewis Carroll and Alice in Wonderland. I've fallen into the rabbit hole...

I have to say this is really hard. I believe that the depression is part of the lyme (it's definitely part of babesia) infection especially since it's in my brain. But there are moments when I am just praying for the strength to get through the next moment.

That's not to say that's how my day is all the time. I do have wonderful moments, especially when I see hummingbirds.

It's hard to live with a chronic illness that leaves one housebound. It's the hardest thing I've ever done.

Which reminds me of something I've been meaning to post about for quite some time. I've gotten some strange feedback that this blog is depressing. If you find it depressing then don't read it. I'm not writing to make anyone feel better. I'm writing because I need to. I write for the thousands of people out there who are isolated with an illness like this. If I read this blog I would feel relieved that someone is being honest about what this is like, especially the first year.

This society had zero tolerance for suffering. When someone dies usually you find someone saying how is so and so doing? The other person might respond with really good. Well, the definition of really good usually means they aren't crying, feeling, struggling, railing at God. It usually means they are "positive", strong, stoic. It's bullshit. Real strength lies in feeling ones' feelings, the awfulness of them. It means recognizing the beauty and cruelty of life. Life contains both.

This blog will be real. I refuse to sugarcoat anything. When I feel good and strong and positive and if I feel like writing about that I will. As Martha Wainright said in her song "Bloody Mother Fucking Asshole" "I will not pretend I will not put on a smile...I will not say I'm alright for you"....


Daphne said...

You keep writing what you're feeling, sweetie. That's what the blog is for -- put it all down in words. You are one of the bravest people I've ever met -- able to face those dragons head-on, no running and hiding. Life is not pretty sometimes and you are right in the midst of some ugly. The tides will turn one of these days, but until then, you are documenting your experience and it's very powerful. Keep it up, I know that I for one don't want to read platitudes -- I want what's really happening with you.

D'Arcy said...

I can't believe someone would criticize you for your blog being too depressing. If they were dealing with the crap that you are, would THEY be full of sunshine and light? I somehow doubt it. Besides which, as you said and as Daph pointed out, this blog isn't for entertaining other people, it's for you to work through everything that's happening in your life. Just because it's available for other people to read, doesn't mean they get any say in what you write.

It's YOUR blog. Write whatever the hell YOU want, about how YOU are feeling. Anyone who finds it too depressing has the choice not to read.

Erin said...

You are incredibly strong to be so honest. I am glad you are writing your true experiences and feelings and you absolutely shouldn't edit those for anyone.

babybuddhalover said...

Your blog is amazing because it is real. Eventhough it was started as a medical journal and emotional outlet for yourself, there are people out there reading it because it speaks the truth and in truth lies strength. You are a warrior- keep doing what you are doing...

Anonymous said...

I agree with what everyone here has said, Terri. As I was reading the first part of your latest post, I was thinking that you do *such* a great job of explaining the incredibly confusing medical tests and results, and making it all very understandable, and that your blog is such a wealth of information for those struggling with CFS/Lyme. And then to read that some have criticized your blog for being too depressing - well, foogies on them!! I think you are doing such a service to those who are looking for real, honest experiences with issues that you are facing. So keep on writing!!! And one day, I know, you will get your dissertation published - it is an amazing and beautiful piece of work that needs to be shared with the world.

Love you!
(am I a dork for signing my comments? It looks like everyone else has a blog or google identity - maybe I need to start a blog?)

Cupcake said...

Miss Terri,

Ditto, ditto, ditto. Exactly, exactly, exactly.

You keep doing what you're doing. We're right here behind you.


Billy Brent Malkus said...