Friday, November 10, 2006

Our Lyme Story

What to know what Lyme is? Go to my Lyme Disease and Ticks FAQ page. 

Our Lyme story really starts with Clay, my husband. He remembers feeling symptoms as early as 16 or 17 when in track. His hips and ankles would get stiff and sometimes swell up, but being young...he figured that maybe that kind of thing happened to everyone. Especially after he went to the doctor and they just told him to ice and rest and he'd be better. Well, it wasn't too big of a deal back then, it only happened every once in a while. So, no biggie.

Fast forward to age 19, Clay goes on a mission for our church to Brazil. He had to walk a LOT and pretty soon his symptoms were flaring up bad. His joints were in constant pain and he eventually came home because of it. He went to multiple doctors (the best in the area) who all said they couldn't figure out what was wrong. They could see there was inflammation, but couldn't see a cause.

Clay then went to BYU-Idaho, where he met pretty ol' me :). He was seeing a rheumatoid arthritis specialist who was pumping him full of steroids, antibiotics, pain medications, and really had given up on trying to find a diagnosis. When I met Clay, I soon realized he had something 'wrong' with him, but didn't know the extent. He had a handicap pass on his car, so that brought up everything. Also, he kinda walked like an old man :). After a while it became apparent how in pain he was. I remember telling my mom he'd probably end up in a wheel chair within a few years, but I didn't care. I loved him! So we got married.

I started going to the doctor with him and realized that the guy was a crock. He would never listen to us, didn't care what Clay thought or felt, just wanted to get us in and out and take our money. We kind of just accepted the fact that Clay had chronic pain that would just never go away. Until it got worse. And worse. And worse.

One day Clay got an ulcer that was causing him so much pain. He wasn't going to church very often because he was sick so often. Our home teachers (a couple men from our church that come and check in on us... make sure we are doing okay and stuff) came and gave him a priesthood blessing, and I remember distinctly that in the blessing he didn't bless Clay that he would feel better, but that doctors would know what to do and we would find answers. Within a couple hours of getting the blessing, Clay's old mission president called him. Keep in mind Clay had been home from his mission for over 2 years. He asked Clay how he was feeling and Clay told him not too well, and the mission president asked him if he had been tested for Lyme Disease. Clay said he was sure he probably had, but he'd look into it. That night Clay looked up Lyme disease and was like, WOAH! hold up- this is so me! All the symptoms aligned and he was sure he had it. The next day he called past doctors and found that NO ONE had tested him for Lyme disease! We all fasted as a family and he went and got tested, and we just KNEW he had to have Lyme disease. However, the test came back negative. We were ironically so depressed over it, because all we wanted was a diagnosis, an answer, as to why Clay was in so much pain. The same day that we found out the results one of my co-workers suggested a chiropractor in Rexburg. She said, "He just can figure out some really crazy stuff- you should check him out".

Clay went to the chiropractor and didn't even tell him any history except, "my joints hurt". After running some muscle tests and things on him, he said, "Have you heard of Lyme Disease?". Clay couldn't believe it! This guy was telling him he had Lyme disease. We later learned that the reason the blood test came back negative was because Clay was on medications that create false negatives when tested.

Clay was treated with homeopathics for probably about 6 months or so and felt so much better. We had so much hope, as he hadn't felt that good in years. However...the improvement halted and seemed to go no where after a while. We gave up on that and thought, at least he's better.

Well, after a couple years, Clay felt horrible again. We had talked to a number of people about his situation and after a few years, someone called and mentioned a doctor in seattle who specializes in Lyme Disease. We brushed it off but after a year of trying to get pregnant, of Clay being in pain, and finally feeling like we can financially look into this, we made an appointment.

Thank goodness we did! We quickly found out that both Clay and I have Lyme disease. Yes, I got it from him. We were both tested and found positive for Lyme and another co-infection (bartonella). We've been treated for about a year now, and both have seen amazing improvements. We still have a ways to go, but we are trying desperately to get our health back. A few questions we get often are, what are our symptoms? Clay's MAIN symptom is joint pain. He is also very tired and his immune system is in really bad shape. It's gotten a lot better in the past year, but when we went to seattle for the first time we realized that his immune system was that of an AIDS patient. My main symptom has been fatigue and occasional joint pain. Both have improved for me as well. Our treatment is basically long term antibiotics (rotated every few months so that we don't become immune to them) and about a bazillion supplements. We also try to avoid gluten and sugar.

If you want to learn more about Lyme, please watch Under Our Skin, a documentary. It's on netflix instant play if you have that! Also, please feel free to ask me any questions. Lyme Disease is one of the hardest trials we've ever faced- but we are trying to keep strong and get through it!

A note to those struggling with Lyme:

KEEP GOING! So many times Clay and I wanted to give up. So many times we felt like we wanted to die because the meds hurt so bad. But by some miracle, we kept going and I can confidently tell you, we are on the home stretch, and feeling so good! I always tell people, there came a switch where I realized how sick I was...because finally I realized what GOOD felt like. I had forgotten what healthy was supposed to feel like, and once I got better, it was amazing. Here are the things that I believe contribute most to getting better quickly:

  • STAY ON MEDS- if they are giving you a hard time, call your doctor immediately and they will adjust it for you. We put up with so much unnecessary hurt. Your doctor will adjust the meds for you because they want you to stay on them! If you are hurting so bad you stop taking them, you need to call the doc RIGHT away.
  • Stay off gluten and sugar, and don't worry about anything else. So many people suggest no dairy, no corn, no meat, no anything basically. When you are sick, and weak, its hard enough to make something that's normal, let alone free of anything. I have studied and been told that the most important things to avoid are gluten and sugar. Therefore, I chose to be super strict with those and not worry about anything else. 
  • Exercise. I remember someone telling me this early on and I thought, "are you kidding me?". But as soon as you think you are close to being able to exercise, START. The major turning point for me was when I forced myself to start exercising. It makes all the difference. 
  • Rest. Rest as much as you need and can. 
  • Don't feel guilty for not doing everything. Remember, your body is fighting a SMART, AGGRESSIVE disease. It's working hard, so give yourself some slack if all you can do for the day is take your pills, and eat.
I just wanted to share that list because so many times I needed someone to tell me something like that and there are SO MUCH MORE stories online about people feeling sick, than feeling better. Doing those things helped BOTH my husband and I to get better. We are still in treatment, but I promise you, the change from last year to right now is tremendous. Keep going. You'll make it.