Wednesday, March 17, 2010

Rheumatoid Arthritis: The Real Thing, Baby?

The Timeline

Oct 8, 2009–Feb 25, 2010: Katie thinks she just has Bursitis all this time. Bursitis is caused by either (1) sports or trauma, (2) rheumatoid arthritis, or (3) infection, and it feels worse than death. Then the Bursitis-like pain starts coming more frequently and spreads from shoulder to shoulder to hand to foot to jaw. Her throat even starts hurting when she touches the outside of it or turns her head. It was nothing she'd ever felt before and when she swallowed it felt scraping on cartilage . . . because Katie knows what scraping cartilage feels like, just like she knows what death feels like.

Feb 25, 2010 (thursday): Student health center doctor checks Katie out and does blood work to test for rheumatoid arthritis, which is "a chronic and progressive disease where the immune system attacks the joints. It is characterized by pain, inflammation and swelling of the joints, stiffness, weakness, loss of mobility, and deformity. Tissues throughout the body can be affected, including the skin, blood vessels, heart, lungs, and muscles" (Wikipedia, I believe).

Mar 1, 2010 (monday): Rheumatoid panel comes back positive, which means Katie could have rheumatoid arthritis (RA), lupus, or another autoimmune disease. X-rays show no joint damage in shoulders, hand, and foot, but foot has a stress fracture (from doing absolutely nothing). Doctor tells her to see a rheumatologist to properly diagnose her. She also tells Katie to see a foot specialist for orthotics.

Mar 8, 2010 (monday): Katie sees her holistic doctor Barbara, who has saved the day countless times past. The diagnosis is that multiple kinds of parasites have come to life again in Katie's body, particularly in Katie's connective tissue . . . just like what happened on Katie's mission in Venezuela in 2003. Back then parasites had set up camp in Katie's right shoulder, but she was treated for them when she got home and her shoulder felt great within a week. The return of her friends is due to an overdose of estress and other health issues that weakened her, which gave them free reign of her bodyThis time around Katie thought there was no way she could have parasites in her shoulders because she hadn't left the country in a year. (Katie likes talking in the 3rd person.)

Katie also has Strep G, which is body Strep and attacks the joints. She got different forms of Staph infections when she went to Argentina in 2007 and Egypt in 2008, so this wasn't surprising. Katie's earlier unusual throat pain was connected to the Strep G too. And bones, arthritis, and pain came up as the number 1, number 2, and number 3 problems in Katie's body. BUT . . . the arthritis showing itself didn't appear to be RA. Barbara said, "Now I may be wrong, but it doesn't look like you have RA, although you do have arthritis."

Mar 10, 2010 (wednesday): Katie sees a rheumatologist for the first time. In preparation she researched everything Barbara had told her and made sure to sound knowledgeable enough to ask the doctor viable questions. Katie's main desire is that the doctor take into consideration that the inflammation could be caused by infection (i.e., parasites and bacteria) before diagnosing her with something she doesn't have and prescribing medicine she doesn't need. After Katie explains all of her symptoms and the doctor checks her out, the doctor agrees that she doesn't think Katie has RA, primarily because Katie's pains aren't displaying themselves symmetrically like normal RA patients and Katie's white blood cell count is normal. Most people with autoimmune diseases have high white blood cells counts because their body is attacking itself. The rheumatologist has Katie do some more blood work to make sure it's not Hep B or C or RA. This final RA test is called the anti-CCP and is more sensitive than the Rheumatoid panel. If the results are positive, it will confirm that Katie has RA. The doctor tells Katie it sounds like parasites are the cause and to come back in a week and a half for ultrasound on her shoulders and hands.

March 16, 2010 (yesterday): Test results are back, and Katie tested positive on the anti-CCP, which measures the amount of antibodies in a person. Normal is 1–20. Katie scores 153. Rheumatologist says that Katie's in the early stages of RA. Katie will see the rheumatologist again on Thursday March 25th for ultrasound.

A little in denial, Katie does more research. Her roommate Ashley is a PA and joins her in the research. Ashley's hypothesis is that since Katie's symptoms are not typical RA, the cause is still bacteria and parasites, but RA is showing up in the blood work because Katie's genes show RA. People who feel great but have RA dormant in them will show up positive on the RA tests. Katie has RA but it has not yet shown itself or is now just starting (for a week and a half now the joints of my fingers have killed, but still not in the normal RA fashion).

The current dilemma: When it comes to early RA, doctors want to aggressively treat to prevent the joints from quickly deteriorating. Medications such as Methotrexate (a drug first used in the 1960s to treat cancer)  are powerful and can do serious damage to your organs. If I don't have to be on Methotrexate (or any others drugs), I don't want to be. You can't be on it when you're pregnant, once you've been on it you could be unable to conceive, and some of it may still in your system even once you're off it and pregnant, causing birth defects. I've talked to a handful of people who have RA, and many of them have had bad side effects from the medicine. My new friend Liz I met last night (her roommate brought me dinner) went into shock upon taking the medication and her mom had to call 911. And then they pumped her stomach.

To sum up the overall feeling I have, I feel beyond blessed that I'm finding out I have RA while it's in the early stages, and even though I've usually been facetious when I've called my herds of parasites "friends," I can't help but thank them, first for saving me from colon cancer and then from full-onset RA. I didn't think that'd make me emotional but it did. Here's picture of a few of them to quitarme (that's Spanish) of that, even though this picture really isn't that horrifying compared to the others I could've posted.

So the research will continue and so will more talks with God. I know He's guiding me every step of the way.


Jennifer said...

Thanks for the update Kates! I'm so sorry that you have to go through this, but like you said, there are so many blessings along the way. You're not alone, and you will continue to be guided. And we will continue to pray for you! Big HUGS from me! :)

cynthia said...

Oh eyes water and my heart aches for you. I wish I could hug you right now.

Dayna Slack said...

Katie, I know god is guiding you also. You truly are an amazing person who inspires many. Hang in there, God has a great plan for you.

Laney said...

So if you are early stages/dormant RA, does that mean that if you treat the parasites, bacteria and strep, that you could then be okay for like 30 years? Like does the RA positive mean you wouldn't really get RA until you're like 80 but its just in your genes, showing you'll get it someday? Or does it means its early stages but progressing fast in the coming years?

What are you doing to treat the parasites and bacteria, that is hopefully less aggressive than metho?

I'm sure you have talked to my mom already, but she took metho for years and I think she still does, occasionally. She got RA while pregnant with me and went on to have Brooke and Conner without difficulty, and I'm almost positive she was taking metho in those years.

Please continue to keep me posted on what you learn. Obviously this hits close to home for me. Love you!

Alycia said...

Trey almost got put on Anakinra. they weren't going to to Methotrexate with him. I guess it is pretty new. you should look it up.

Kate said...

I'm glad Trey is okay and didn't have to do that, Lee. I just read up on Anakinra, and it says, "At this stage it cannot be ruled out that anakinra is a human carcinogen." Great.:) They've been finding tumors, lymphoma in particular, in lots of patients taking it.

Susan said...

Luv ya Katie!

Emily said...

Thanks for the good update! It all seems so complicated. I hope you don't have to go on those awful drugs, but I also hope you can find some relief! Keep the updates coming! Love you

santino, polly and little dude Eli said...

So have you heard back from the ultrasound yet? Sorry I am just barely reading founding out about this. I am a little slow but I hope things will work out the best for you, and they always do because of your positive attitude, you are great, LOVE YOU, Katie!