Sunday, October 31, 2010

Just a little update

  • Went to Seattle this weekend. Clay has officially been diagnosed with Lyme Disease, and Bartonella (a disease that travels with Lyme). Our doctor went over all the lab results and he tested positive on multiple tests.

  • Clay is SICK SICK SICK. To give you the readers digest version...our bodies have these cells that are our fighter cells...CD57's I think? Anyway- you are supposed to have a count of over 100, Clay's count is 15. Which basically means his body isn't fighting for him and has kind of given up. She said that his immune system has become auto-immune...meaning it attacks itself now...and that his immune system is basically the same as an AIDS patient. This explains why he gets sick ALL THE TIME!

  • Clay's vitamin D is low low lowwwwwww. So low, he had to get a prescription of a really high count of vitamin D that he is now taking.

  • Clay's blood is THICK and really quite messy. It is very thick with bio-film. This causes his organs to not get the nutrition they need and the oxygen they need...so it's pretty bad news. This is all of course, caused by the Lyme.

  • Clay has mono, two types of pneumonia, and basically a ton of other things I can't remember right now.

  • Now that she sees how bad he is (she said he's the youngest she's seen that is this bad, meaning he's had this for a LONG time...but she keeps saying how good it is that he's only 25, because he shouldn't suffer permanent damage from anything...because his body is so young still), she thinks the best thing would be to go once a month for a while...so that's what we'll do.

  • His treatments are gonna be pretty heavy for a while..and she said he will definitely herx BIG with this next treatment. It'll probably be this week...so that'll suck. Oh well- the fact is, it's actually GOOD news when that happens cause it means it's working. So it's like...we are happy when he herxes, cause we are thinking "DIE LYME, DIE!"...but at the same time, I wanna break down and cry cause Clay is in soooo much pain.

  • We finally nailed down with the doc what he should stay away from- food wise...and it's a definite NO REFINED SUGAR, and NO GLUTEN. She said it's a good idea to stay away from dairy...but it's okay to have a bit now and then. Like- she said don't drink glasses of milk, and absolutely NO ICE CREAM! hah. She emphasized that a lot. Oh yeah, and NO YEAST. But all other grains and natural sugars are okay. So I can totally work with that.

  • She said that Clay shouldn't fly in airplanes, go on buses, be around sick people, or lots of people really. She said if ANYone is sick, he will get sick. And his immune system is fighting hard enough. Clay said he still wants to fly though...because it is too stressful for him to drive. So...we'll see. But he probably wont be going to lots of church (he's not anyway cause he is usually sick these days)...so that kinda sucks.

  • We are so grateful that we found our doctor, and we are so grateful that we both have such understanding employers and family and friends. Can you imagine if we just gave up and never sought out this doctor? Clay's immune system would just get worse and worse and he could even possibly have a heart attack from his blood getting so thick (that happened to one of her patients that was 39)! I'm just so grateful for so many things.

  • With that, I have a hard time not being SO ANGRY with the medical field in southeast Idaho. Do you know that multiple doctors said to Clay, "There's no way it could be Lyme Disease" when he presented them with the idea? And wouldn't even give him the time of day about it? Do you know that he was tested for Lyme disease before? But in the worst way possible, making it come back a false negative? But of course the doctors just accepted that? This all happened years ago...can you imagine? Clay could've been cured by now had they just been humble enough to listen, and educate themselves a little more. I feel like shouting on the rooftop to EVERYONE about Lyme disease. No one knows about it, and it's ridiculous because SO MANY people have it. And they don't even know it. Or they've been "treated" with 2 weeks of antibiotics and told they are fine, when the aren't. I could go on and on. I just wish that doctors weren't so prideful.

  • On other notes- I have eaten enough candy for an army...and I've started listening to Christmas Music. I know, I know. I just can't help it. I'm so excited! I only listened to three songs on Josh Groban's cd. But they are so good, I don't think I can stop!

13 comments:

Sharon/mom said...

Well, that made me happy/sad. I am so happy that you caught it now and found someone to help him. It's so unbelievable all the things it does.If Clay wants to fly he should wear a face mask. I have seen other people wear masks on airplanes, so it wouldn't be so weird. I know they aren't comfortable, but it would be so worth it. I love my plaques!!! I think I'll go in and hang them up right now. I love you!!!

Mindy said...

So sorry to hear about Clays health. I am glad you blog about it though. This way, you are at least informing everyone who reads your blog about lyme disease. I find it fascinating. Oh, and christmas music... definitely not to soon. I LOVE christmas music and everything that has to do with christmas!

AMY AND MIKEY said...

Oh my gosh danielle, this blog made my eyes well up in tears and my stomach sick. I am so sorry. I can't believe Clay has been dying. Well I can believe it, it's just not fair, and I'm just so glad that you were inspired to look for doctors and that you are such a good researcher adn that itw as so easy for you to find "THE DOCTOR" of lyme disease. I'm so grateful his work is understanding so he can miss work. has clay thought about my method of pain medication? Is that legan in Idaho? If it is, can he use it? Or woudl it be bad for his body? I just hate that he has to go through all that pain. I wish there was something I could do for you guys. I guess I will talk to you guys about this later- I love you both so much.

Kristi M. said...

Wow! Such a blessing that he is correctly getting treated for it now with someone that understands and can help him. I find all of this interesting. We had someone in our ward get lyme disease but they were able to catch it incredibly fast shortly after she got it. Just incredible what lyme disease can do to the body. It messes with the entire thing.

I have yet to break out the christmas music. I think it is partly due to the fact that my birthday is always near Thanksgiving so I have a special place in my heart for that holiday and hate to do anything to skip right over it. Christmas music is just pretty in general and so easy to listen to.

Christine said...

Gah! I am so sorry about Clay's sickness! My friend is super sick right now with stomach issues and it is such a pain to figure it out!

And...I totally started listening to Christmas music last Sunday. YES!!

HeidiT said...

What an ordeal you guys are having to face! I am so glad you have found the right help and are getting some answers. Autoimmune diseases are so tricky to diagnose, what a blessing to finally get back some definite test results. (When will docs learn that we know are bodies best and they should listen to us!)

Lizzie said...

Wow. I wish everyone knew how sick he is. Maybe they do now. But I just feel so bad that he's been going for so long where people assume he's fine just because he looks fine. I love how you've known the whole time though. His wife. You've known something wasn't right and believed him.

I'm sorry you guys have to go through this, but happy at least you're on the road to recovery.

Love you both

Kayleen said...

so what I know about lyme disease is that you can get it from a tick. Is that how Clay got it or is there another way? Also, are there some people who could get it from a tick that just don't have these reactions? My neighbors daughter was diagnosed with OMS last winter and it sounds like very similar issues. I'm so sorry! This just sounds so hard!

Rebecca said...

I agree with Amy. Clay needs to get a hold of Amy's preferred pain meds. I'm so sorry. Please know we pray for him every prayer, and I put his name in the temple every time I go. He'll get better. I know he will. He just has too!

We love you both.

Brittany Flint said...

Oh my heck. i saw clay and asked how the trip and he was and he said it was good but holy cow! he just acts like everything is ok the poor guy! if you guys need anything let me know. if you need to spend time with us let me know to. we are leaving on our trip tomorrow but we well have to get together again soon!

The Conger's said...

Wow I am so sad for all you two are going through. We pray for you guys and really hope that with this medication he can hit a breakthrough soon so all the sickness and pain will stop. Good luck! And from one cook to another I bet it is sort of fun actually trying new gluten free and sugar free recipes if you find anything that is super tasty pass it on. And Christmas music really Danielle? You have to let each holliday have its time, haha but I guess if it makes you happy who cares.

Jenni said...

Oh man Danielle, it really breaks my heart to hear that clay is so sick. It would just tear me up to see Michael that way. But I am so thankful that you have finally found some help!

Good luck and I really hope he starts to feel better soon.

Megan and Greg said...

Greg read this to me DAYS ago. Sorry I am so slow to respond. I can't believe all that's happening to you guys. Just hold on to the thought that it won't be forever. I love you. hang in there and know we all love you guys.