Hanging In There...

I have been pretty sick with starting up on everything again, which was no fun over Christmas, but I didn't want to wait any longer to get back on my meds since I had been off them for awhile. I started back on 100mg of doxycyclene twice daily along with all my other supplements. After five days I will add in another 50mg doxy to the mix. Five days after that I will add Biaxin, then over the next 10 days two other antibiotics. Slowly building the dose/adding drugs helps to lessen the shock of it, and I'm glad my doctor likes to be cautious.

My joint pain has come back with a vengeance, making it hard to do simple tasks. I have also had headaches, nausea, hot/cold flashes, muscle aches and severe fatigue. YIKES. I really wish I had not stopped taking everything. In spite of all this, we have had a good Christmas break in Oregon, and have had lots of fun with Bryan's family. He is great about helping me out, and if I'm not able to go somewhere or participate in something, I'm glad that he is able to. Although I generally try to do as much as I possibly can. Lying in bed 24/7 only adds to discouragement, and I have to stay positive! I'm learning that you have to force yourself to focus on positive/good/fun things and I find myself making lots of plans for the future. It's mind over matter like I've never done before...

I Did Something REALLY Stupid...

I have been really discouraged now for the last couple of months, which I guess is normal given the circumstances. But I did something really, really stupid and I'm going to blog about it so I won't do it again, EVER. Because I was discouraged, and partly because I was concerned about money, I skipped my Seattle Dr's appointment in October and ran out of my meds the day before Thanksgiving. So I have been off my meds for 3-4 weeks. Most of my symptoms have returned, but this time an added new bonus is a pretty substantial tremor in my right hand/arm that seems to get really bad when I am tired, and I'm having pretty bad balance issues.

My appointment in December was on the 18th, and I made sure to go this time. My doctor was not happy with me AT ALL, but updated all my prescriptions and has gotten me started on all my stuff again. I have started everything again as of today, and I'll keep you posted as to how I feel moving forward.

An Alternative to Mepron...Alinia

When I went to the doctor in Seattle this morning, I told her that I could not afford to stay on Mepron. Unfortunately, Mepron has been the most effective of any of the drugs I'm on, because it is a very strong antibiotic and it's an anti-malarial. One of the infections that I got from that tick bite was Babesia, (I actually have two different strains, Babesia duncani & Babesia microti.) Babesia is an infection of the red blood cells, and is extremely difficult to treat. Traditional treatment is with high doses of anti-malarial drugs, Mepron (atovaquone) being among the best.

The problem is that Mepron costs me $465 every ten days (that's with my Rx insurance) except that since I've been on it for several months, the insurance doesn't want to cover it anymore, so the full cost of about $4500/month just for the Mepron, would be up to us. I told my doctor that it might as well be a million dollars, because we don't have $4500 a month to spend on one antibiotic. We have looked into several prescription assistance programs, but because I have insurance, (even though it won't cover Mepron,) we don't qualify for the programs. This was extremely discouraging, because in some ways, I feel like Mepron was giving me my life back.

Well, great news! There is an alternative to Mepron, called Alinia (generic is Nitazoxanide or Nizonide) that has been effective for some people that didn't respond well to Mepron. It is in tablet form, and is about $1200 from a pharmacy if purchased in the U.S., but we are looking into trying to get it from Canada or somewhere else. I will keep you posted on our search and also on how I respond to it here in the near future. We are cautiously optimistic that this might be a great alternative for me.

Keep On Keepin' On

Just a quick health update: I'm still taking all my meds for my treatment. The biggest thing I've noticed in the last couple of months is that my hair is falling out! Luckily, I've always had tons of hair, but I was teasing Bryan the other day that we both have receding hair lines. This clump of hair came out as I washed and styled my hair the other day. It's a little scary that this amount has been the norm lately. It seems like it might be a result of the heparin I've been taking, but I'm not sure. It just seems to correlate.

I still take medications eight different times throughout the day, and two of those doses are antibiotics. Those always make me sick with severe nausea, but usually only for about an hour after I've taken them. Then it passes and usually I'm fine. I've also found that eating a large, substantial meal, (ie., rice, pasta, protein, etc.) and making sure that my stomach is full prior to taking the antibiotics does help. Other than that, soda crackers (saltines) have become my best friends. I've also learned from sad experience that if I ignore the nausea for too long before doing something about it, (ie., eating crackers) I will end up vomiting up all the food I've eaten and all the meds I've taken over the prior three hours. I try to avoid this at all costs for obvious reasons, (the price of the medications among them.)

We're looking into various options for continuing my treatment, since it's extremely expensive, and I haven't been working for quite awhile now. Still, Heavenly Father has continued to provide for us and open doors whenever we feel like we're at a dead end. I'm still having problems with severe fatigue, swelling & joint pain on my bad days, but all in all I am feeling pretty good and looking forward to the future!

Working Around Lyme for Our Honeymoon

It has been so good for me to keep busy over this past year, and I have become pretty good at making adjustments to normal life that still allow me to do things. Well, when we were planning our honeymoon, Bryan really wanted to go on a cruise. A cruise to any type of tropical location was out of the question because of sun sensitivity due to all the antibiotics I'm taking, (I literally get hundreds of little blisters on areas that are exposed over a long period of time, even with sunscreen...found this out the hard way.) So we decided to take an Alaskan cruise on Holland America Line. More about this later.

It was the best decision to do the cruise, and we made memories that we will have forever. The cruise was relaxing, with lots to do if we wanted to do things, and lots of R&R if we didn't. I needed some serious rest after the craziness of planning a wedding! We got room service for breakfast almost every morning, and enjoyed a few formal dinners in the dining room. One of the best parts for me was that I could be outside as much as I wanted to, because when we were outside I wanted to be bundled up (to keep warm,) so everything was covered, thus no problems with sun exposure. We ported in Juneau, Skagway & Ketchikan, Alaska; Vancouver & Victoria, B.C.; cruised in Glacier Bay National Park; and finally ported in San Diego. We were both too tired to really do anything in San Diego other than fly home, but it was a wonderful trip!

After a lot of debate, we decided to rent a wheelchair for the duration of the trip (www.carevacations.com, 877-478-7827) so that I would be able to enjoy the trip and see as much as possible, and also so that Bryan would be more in charge of the tempo of the trip...and well, not waiting for me everywhere we went. The decision to rent a wheelchair was also one of the best we could have made. I think it's one of the most effective ways to beat lyme fatigue (until I get better.) A wheelchair allows me to keep going for much, much longer than I would be able to if I was walking. I have had such a hard time with this over the past year. I don't like the idea of using a wheelchair for anything, and frankly, I know I don't look sick. I worry about what people think when they see a young, healthy-looking person sitting in a rented wheelchair.

Bryan says I worry too much. He has had a much easier time embracing the wheelchair option than I have, but I have to admit that it was the best thing for us to do. We made the arrangements several weeks before our cruise, and for about $75, it was in our stateroom waiting for us when we got on the ship. The $75 covered the 11-day cruise, and they came to pick it up on the last day. We brought a backpack (Bryan calls it my diaper bag...complete with all my meds, water & snacks to take them with,) and I bundled up each day with the wool plaid blankets provided by the ship. I would sit down in the chair in the hall outside our room, and then we'd be off. I did get tired a few times even with the help of the wheelchair, but we got to see everything we wanted to. Almost everything was wheelchair accessible, and the few things that weren't were prioritized...at Craigdarroch Castle in Victoria, B.C., for example, we decided to brave the 5 flights of stairs in order to SLOWLY view the place. I had actually been there when I was 17, and loved it so much that I insisted Bryan see it...so we did it. It was worth it.

Holland America Line was wonderful, and we actually got an added bonus. We hadn't planned to book with HAL, but because it was so late in the season, we went with them because they had the LAST Alaskan cruise scheduled of all the lines we could find. It worked out perfectly with our wedding plans & schedule, too. Well, we didn't know that HAL actually caters to older clientele, so that Bryan and I were among the youngest on the ship, by about 30 years. One night in the dining room, the staff came out to sing to us and bring us a little cake that said, "Happy Anniversary." They also sang us an anniversary song, and then afterward explained that they don't usually get honeymooners...it was really funny. This actually worked to our advantage, because as slow and awkward as we were, we didn't feel out of place or in the way at all. The staff was wonderful and we didn't have any problems navigating the ship with the wheelchair either. If you are currently dealing with the disability associated with Lyme, I would highly recommend this option as a wonderful vacation possibility. We had a great time!

Wedded Bliss!

September 18, 2009 was a gorgeous day in Portland, Oregon, and it was a wonderful day for Bryan and I. I was feeling pretty good and probably going on adrenaline when I got up at 5:45 am to start getting ready for our big day. I was excited with some butterflies in my stomach. Bryan called to see how I was feeling and tell me he loved me. Half an hour later we were getting last minute things in order before our marriage ceremony. I did fine all the way through all of that...I'm sure the adrenaline helped.

After our marriage ceremony, we met each of our guests, most of whom offered us hugs along with their congratulations. That's where I ran into some problems. By the time I was in the Bride's room prepping for pictures, I felt almost too weak to stand up. I have such a hard time doing anything that requires me to lift my arms...it wears me out fast. Luckily, my wonderful friends wrangled up a wheelchair for me to use for the two hours we were taking formal photographs. While I didn't want any pictures of it, we did have it behind the scenes for me to sit down and rest, and also allowed me to save my energy for the rest of the day ahead. I've had a hard time with using wheelchairs and scooters, but I am a practical person, and I know that for right now, there are moments where they are a necessity.

To save my strength and energy further, instead of changing out of my gown for our luncheon, (at an ITALIAN restaurant, no less...) I opted to remain in the white ball gown and take my chances. Some very kind servers helped me to creatively cover myself with an off-white tablecloth so that I could enjoy the lasagna I had ordered for lunch. Don't worry, no major catastrophes, and the lasagna was great!

After the luncheon and before the photos prior to our reception, we grabbed a quick nap on the couch at the church. I have learned to trust my body and to listen to it. When I have trouble listening, luckily I am surrounded by people who will help me out by telling me what to do. Bryan is one of those people, and there were a couple others this day that "forced" me to take a nap. It was good for me. I've found that frequent naps allow me to be more productive.

Another thing that helps me is to avoid standing for long periods of time. We decided that during our reception I would sit while we were greeting guests, and instead of mingling, we would invite people to come and mingle with us where we were. We found a taller chair that was the appropriate height, and Bryan stood beside me all night. It worked beautifully. Other than cutting the cake, our first dance, and dancing with my dad, I was able to sit the whole time.

As a result of all the little things we did throughout the day to conserve my strength, I even felt good enough to dance with Bryan and our friends for a bit (who could resist dancing when "Dancing Queen" is playing??) towards the end of the evening.

At the hotel, I was obviously so exhausted that Bryan had to carry me into the room....wait. I guess that's really more a rite of passage, huh? All joking aside, to us it had been a perfect day. For a few short moments on a beautiful, early-fall day in September, we got to forget all about Lyme disease and have the perfect life! Now begins the real journey, and I am so happy to have Bryan by my side.

Engaged!

Bryan proposed to me on July 27th, and I am so excited to marry him. The whole time we've been dating, I've known (and he's known) that I have Lyme disease. He's seen me during some pretty low moments, but I wasn't sure if he really understood the full implication of everything that Lyme entailed, and what it would mean for us physically, emotionally and financially if we were to get married. I felt like he should fully understand all of that before making such an important decision. While visiting my family in Coeur d'Alene, Idaho right after his family reunion, I asked he and my dad to watch the movie Under Our Skin with me. It's an excellent documentary that lays out the complexity, controversy and difficulty surrounding Lyme disease. It brings a lot of things out into the bright light of day, and deals with some of the stark realities of this debilitating illness.

I remember crying as I explained to him why I wanted him to watch it. Dealing with chronic illness is difficult, and would be even more difficult while trying to make all the necessary life adjustments that happen for any newlywed couple. I am currently unable to work, and most days I'm not able to contribute very much in terms of everyday tasks, cleaning or even cooking. He wants to attend dental school with all the time and effort that will entail. I wanted him to be aware of all the implications that this illness could have for us in our life together. In spite of my thorough explanations, and after watching the movie, to my complete and total surprise he proposed to me six hours later. While visiting with me on the phone the next morning, my dad remarked that I would never have to wonder if Bryan really loved me. I am amazed and humbled that he is willing and able to look past all of this! More than that, I am so glad that he is the wonderful man that he is, and that I will have a partner in this battle from here on out!

Going On Vacation??

Yesterday my boyfriend Bryan invited me to come with him to his family's annual reunion, a week-long retreat at a lake in Washington State. I am very excited about the opportunity to go with him, and it sounds like so much fun, but I am really nervous and a little scared about how I will feel (physically) while I'm there, and how I'm going to take all my medications in an inconspicuous way when we're all together in such close quarters.

We've been on weekend trips with friends in the past, but never for a week, and never with his family. I'm nervous about what he'll think (and what they'll think) if I'm too tired to do the types of fun, outdoorsy things that people do at reunions. What if I get really sick, or have a reaction to my meds? I'm going to go, of course. But I've got to figure out how best to address a lot of these concerns in my own mind. Being outdoors and trying to maintain normalcy in my life has really helped me to cope with everything that has happened this year, but going places is a bit more complicated given my "normal" right now.

Bryan is wonderful about everything, and has never given me any reason to worry about being tired or slow...he's very patient and always helpful. So the reality is, I really have no reason to worry about the family reunion. Bryan and I will have fun, no matter how I am feeling or what I can or can't do. I consider myself very blessed to have him in my life right now.

Anytime you are facing major challenges in life, it tends to become very clear who your true friends are. I'm really glad to have been blessed with such amazing and life-long friends that have really rallied around me to provide me with support. Bryan would be at the top of the list. When all of this is said and done, I want to be a better, more compassionate and understanding person, so that hopefully I can provide others with the love, support and hope that I have felt from the people in my life right now.

The Latest

I had another doctor's appointment in Seattle on Monday. It went well, but it was discouraging in some ways. I had been feeling really well (more energy, less aches, no numbness in my arm & leg) for almost 5 weeks. Three weeks ago I finished my initial prescription of Mepron, and after three weeks off the medication, many of my symptoms have returned. It was wonderful to have a reprieve and feel better for awhile, but it is really discouraging to have things coming back.

My doctor was very encouraged that I had responded so well to that particular cocktail of antibiotics and other medications. Because she believes we are on the right track, I'm going to be doubling all of my meds, in addition to starting on a blood thinner. The latest research on Lyme shows that 80% of patients that develop chronic Lyme have a coagulation problem that prevents the medications from being fully absorbed. The blood thinners help counteract this. Last time I was in Seattle I had blood work done that confirmed this condition and so hopefully the blood thinners will make a difference as well.

It's great news that we have found the right cocktail, but doubling my doses combined with boosting absorption with blood thinners means that I will probably be a lot sicker for awhile. I was really discouraged by this, but I just have to remember that it's part of the process. I've read a lot of stories of people that respond well to medications after a month or two, but then as soon as they go off of them, the symptoms come back. This is the reasoning behind long-term antibiotic therapy.

I've read testimonial after testimonial of people that had been told by their doctor that after a month or two of treatment, they would just have to live with their remaining symptoms and ailments. In desperation, each of these people sought out the physicians who believed in long-term antibiotic therapy, and after a year or two of treatment (sometimes more) most of these people have made full recoveries. It's controversial, but the idea is that the symptoms are caused by an ongoing, chronic and active infection...and that once you finally eradicate the infection, the symptoms go away.

I'm about five months into treating the infection. While I'm very grateful to know what's going on, and to feel like I'm on the right track in terms of treatment, I have to repeatedly remind myself that it's a long process. I guess I'm a little impatient. I'm trying hard to be positive, and to focus on the good things in my life. When I feel good, I've been trying to make the most of it, which sometimes causes me to try to make up for lost time and I end up over-doing it. There's a balance and I'm trying to find it.

It's Amazing...

Just a quick post today, because I haven't put anything on here in a few weeks. I am still feeling like I've got good energy, and it's going on almost a month now that I've felt that way. I still get tired, and usually have to take a nap during the day, but I don't wake up anymore feeling like I can't get out of bed. I've also noticed that my joints are so much better, little tasks involving my hands are much easier now. I was able to chop up a bunch of potatoes last night, something that I dreaded doing a couple months ago, because it hurt to do it. I'm still having a little pain in my right foot and hand, but it's hardly noticeable compared to what it was in January. The pain in my abdomen has gone completely away as well. I also noticed the other day that the constant throbbing in my hands and feet has gone away. I'm very excited that perhaps I have turned a major corner in all of this. I'm finally feeling like maybe I'm starting to get better. I'm nervous because today is my last day on the Mepron, (anti-malarial) and I think it has done wonders for my energy...I've read that sometimes as people stop their treatment with specific medications sometimes the symptoms come back within a few weeks.

I will leave that in the hands of my capable doctor. She specializes in Lyme and other tick-borne diseases, and she's also a naturopathic doctor, so she combines prescription medications with nutritional supplements that help to keep everything in balance. I've read horror stories about people doing treatment for Lyme, because the antibiotics are so aggressive they throw everything else out of whack. I haven't had any complications from all my meds, and I think it's because she knows what kind of support my body needs right now. In addition to my prescription meds, (antibiotics, antimalarials, etc.) I also take several different probiotics, vitamin D, multivitamin, trace minerals, zinc, immune stimulants & other supplements twice a day to keep everything up. Even once I'm completely better, I will always have to make sure I'm doing things to support my immune system, since this is where Lyme does most of it's initial damage. My doctor understands this and is helping me tailor a treatment plan just for me. She is awesome, and I feel really blessed that I was able to connect with her for my treatment.

My next appointment is Monday, June 22nd. I will probably get a whole new meds regimen, and we'll see how that goes. Because I go every 8 weeks, my next appointment won't be until the end of August. It's hard to believe how quickly time is flying by...my doctor had initially told me that the first 2 to 3 months of treatment is the worst, and then you start to see steady improvement. She also said that by August we should have most of my symptoms resolved. I confess, when she said that I had a hard time believing her. But now, a little more than three and a half months into my antibiotic treatment, I'm very excited to report that all signs point to marked improvement!!