Doc Appointment

I saw Mitch and the doctor today for like 2 1/2 - 3 hours. Some of that time was waiting time, but still, quite a while! I met with Mitch first and then we waited for the doc and I saw him for a little bit and then I went back to talk with Mitch for a few minutes. I love having Mitch because normally with a doctor you talk to them for like maybe 15 mins if you're lucky... Well, with Mitch he's able to talk with me for at least an hour, go over everything with me, explain everything to me, and come up with a plan. Then we go over to the doctor and Mitch tells him what he was thinking (for a plan of action) and the doc sometimes has additional ideas, then he signs off on everything and sets up the different prescriptions and referrals and whatever is required of the actual doctor to do. It's nice though because then it only takes like 15 mins of the doctors time as usual, but I still feel like everything was thoroughly thought about & stuff. I hate seeing a doctor for only a few mins and it doesn't seem like they fully have an understanding of what's going on with me.

Anyway, when I met with Mitch today we were able to talk about my labs. I think I misunderstood his assistant about my Lyme test (or she misunderstood him or something). But today he explained it to me. It sounds like it's pretty similar to my last test. Basically they test for different proteins in my blood, and I believe I'm supposed to have like 2 out of 3 of the "bars" of proteins but apparently I only have one showing up. He said that some professionals would say that's enough to know that I have Lyme, but others would argue the opposite. The "rule book" definitely thinks it's not enough (but I learned that it's something that hasn't been updated in a while and there's a lot of medical politics behind that which make the "standard" pretty LAME. Lonnggg story). Anyway, so there's a new test where they can take my blood and check that specific bar more closely. When they look at it they should be able to tell whether that bar/protein is showing up in my blood because of lyme or because of another reason. He said if they say it's because of Lyme then he pretty much believes I DO have Lyme... but if it doesn't, then it's still kind of undetermined. Again, you can get a pretty definite "yes" but it's not really ever a definite "no" since the tests are so questionable.

He explained to me why the test can differ each time and why they can show up negative even if they KNOW you have it (tick bite, bullseye rash, symptoms, etc). So, what they look for in the blood proteins that show up in your blood when your body is fighting off the Lyme. So, if for some reason your body isn't fighting when they take the blood, then it might not show up. I wish they were able to look for the actual lymie bugs (spirochetes) but I guess they can hide out pretty well in different parts of your body so they would probably be hard to find.

So, today he faxed an order over to IGeneX again for them to check that specific bar for Lyme which will hopefully come back with something conclusive. He's also going to start me on anti-biotic treatment again to see if I notice any changes. If the meds work I will either feel better or feel worse - most likely worse. It's called "herxing" when your symptoms get worse but it's actually a good thing because that's how you know if it's working or not (it happens when your body is killing of the lymie bugs). I'm starting one antibiotic tomorrow. I guess when I was young I had a reaction to a penicillin, so we've assumed that I'm allergic to it. They're going to refer me to a allergist to check me for a penicillin allergy because penicillin is what they'd normally start me on for Lyme treatment, so if I'm not allergic then they can prescribe me some of that. If I am, they need to decide which other antibiotic to prescribe me. Another thing I will start tomorrow is this stuff called Cholestyramine. It's a powder that you mix into water. It's normally used to help lower cholesterol when taken WITH food by binding with the cholesterol in your bile to keep it from being re-absorbed into your body. In Lyme patients you take it WITHOUT food, in between meals, and it can bind with the toxins in your body and then you pee them right out. Pretty cool, but it takes quite a while. That one is kind of an "extra" thing to try to just see if it helps. He said that some people say that they get better just from that, but it's not always the case. That would be pretty simple though, wouldn't it? :) I will start taking it once a day and work up to 3 times a day. I have to take it 2 hours after a meal and 2 hours before a meal which means I need to have 4 hours total in between meals. I generally snack and stuff throughout the day, and my breakfast and lunch are pretty close together, so I'll have to work on that. I also can't take it close to the time that I take my meds.

One more thing that they're going to do is try me out in the Hyperbaric Chamber. The Hyperbaric chamber is a vault thingie and inside it is about 1.5 - 3 times the normal atmospheric pressure (equivalent to 45 feet below sea level). They also pump pure oxygen into the tank. It basically makes it so that your blood receives oxygen better & faster I think. They use it for athletes with injuries that they want to heal faster & stuff like that. If your blood is receiving more oxygen, your cell walls are too, which means accelerated healing. Basically, the lyme bacteria generally doesn't survive very well at that pressure & oxygen level. We're just trying it out WITH the antibiotics to see if it helps at all. Most patients do several treatments, but I'm only doing about 5 - 7 treatments.

I just found this article that a man wrote who was diagnosed with Lyme and got treatment in the CHICO Hyperbaric chamber. It was pretty interesting for me to read. If you're interested, here it is:

http://www.hbotoday.com/treatment/lymediseasearticle.shtml

So, that's basically what we're doing for now... they're checking more into the lyme blood test (the protien that's showing up in my blood tests), they're starting me on anti-biotics and referring me to get checked for a penicillin allergy to see if they can put me on that, we're trying out the hyperbaric chamber, and we're trying out the cholestyramine which will hopefully bind to toxins in my body and take them straight out in my waste. I will blog more when I know more! Mitch has been REALLY great, waiving as many fees as he can and just being really helpful all around. He's a really, really nice man!

The things I want to keep in prayer, and you can too :-) if you think of me:

CLARITY: I want to be able to tell easily if I feel better or worse since I will have to report that back to my doctors. It's hard for me to tell sometimes because I've been sick for 10+ years. It's hard for me to gauge if my pain is better or worse... it's just THERE. ALWAYS. So hopefully I will herx or feel better enough for me to notice.

STAMINA: If the treatments do work then I will probably get pretty sick for a while. I want to keep working and living a somewhat "normal" life which might be really hard for me if I'm feeling worse than I already feel. I need to pray for stamina for myself and also for my Ryan for having to take care of me during the process. He's so great. :)

PEACE: I get easily overwhelmed. Something new and sorta drastic might really throw me for a loop so I really want to feel and accept God's peace which is the only true peace that my heart can have. I also want to have peace about my decisions and peace about the future if the treatments don't go as I hope they do.

That's basically it. I'm looking forward to this opportunity not only because it might mean that I'm finally ALL BETTER after being sick since I was 13-ish, but also because I think it will force me to have to stay in communication with God which I'm not very good at doing on my own, as well as with Ryan and my doctors. It's something that I have to jump into with both feet which I'm never brave enough to do. Sometimes being out of your comfort zone is the best thing for you. Hopefully being out of my comfort zone WITH extra oxygen will do me some good. :) If nothing else, I think the hyperbaric gives you extra energy.

One last un-related note: We saw "Up" and it was so very cute! I teared up but I didn't cry so I was pretty proud of myself. I guess I had to make up for my stupid reaction to My Sister's Keeper!