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!! 

A Not-So-Quick Update

I know this blog is probably not very interesting to most of you, but I think it's really important for me to write about all the different things I'm experiencing throughout this process, since it's so easy to forget what's been happening from one week to the next. Even just reading back over the last few posts, it's interesting to be able to recognize progress.

This week I've realized that this stuff has really affected my ability to carry on conversations...yes, I know...I'm really good at talking. If we're talking on the phone you may think I'm off my rocker in saying that, since I can still talk. :) It's not so much the talking, but the content that's a problem right now. I've always been a great conversationalist, but it's a lot harder for me right now to talk about things much beyond the days events or what might be happening tomorrow. It's hard for me to put together my thoughts and really articulate what I'm thinking. Most of you have probably noticed at one point or another that I also have difficulty finishing sentences. These are all symptoms of Lyme, and the doctor told me that the treatments would affect "higher brain function" even more for awhile, but I was hoping that I wouldn't necessarily have to deal with that.

I have also noticed that I have a hard time with word retrieval, and I get confused with what day it is, or if I had a conversation with someone earlier this morning, or last Wednesday. It's all a little disconcerting, but easier to handle since I know why it's happening, and that it's temporary. All of this is happening because the infection is in my brain, (which is why I've had balance issues for the last couple years) and as the antibiotics and my immune system kill the bugs, the whole process causes inflammation. The inflammation causes some messages to misfire, so once in awhile, information is not available when you need it.

When I was in Seattle this last time, I tried to use my ATM card, (it's for a checking account I've had for over 10 years, and I've never had a problem remembering my PIN) and for the life of me, I could not remember my PIN. I tried four different times to put it in, and couldn't get it right. The information was just not there. There was a long line of people behind me, and I was embarrassed by that and flustered about the whole situation. Luckily, I always bring an emergency credit card with me when I travel, so I just used that. That incident was really upsetting to me, but those kinds of moments are getting easier to deal with because I just tell myself that it's necessary to getting better.

In happier news, I think the Mepron and the Cortef are really helping me. I started on my second bottle of Mepron yesterday, and I have noticed substantial improvement in my energy over the last week. I have still been tired, and I still need to rest frequently, but I've been able to get so much more done compared to the last several months. So, I've taken the Mepron for about 22 or 23 days now. The doctor thought that the 2 strains of Babesia (a co-infection to Lyme that's similar to Malaria) that I have are probably contributing to the extreme fatigue that I've had, and that treating that infection and getting it out of the way would help. I think she was right, and I'm really excited about the improvement.

The rest of my antibiotics and supplements are going well, and I seem to be on the right track. I feel really blessed, because compared with others I have heard from and read about that are in my same situation, I think I'm tolerating everything really well, and that I'm actually pretty healthy given the circumstances. I had a fairly busy afternoon and evening yesterday, and I was expecting that I would probably be in bed all day today recovering. I woke up this morning feeling really good, so I'm going to try to get a few things done around the house. I have to take it easy though, so I have enough energy to get to church tomorrow. Sometimes when I feel good I have a tendency to overdo it.

A friend of mine came to visit last week and told me about another friend she has that was diagnosed with Lyme disease awhile ago. She describes it as knowing that you have a jar with a set number of marbles in it each day. The marbles represent your energy. If you want to use the marbles doing dishes and vacuuming the house, that's fine. If you want to save them so you can BBQ with friends, that's fine, too, but you probably aren't going to have enough to do both. The point is, everyday, you have to decide what you want to use your marbles for, since there is a limited supply. I thought that was a really great analogy. I am learning to pace myself for now, and eventually, when I get feeling better, I will have so much more appreciation for the gift of health and strength. You hear that phrase a lot, and it seems kind of trite most of the time when we use it. It has entirely new meaning to me because of all of this!

Oh, one more thing. I was watching Mystery Diagnosis this week on TLC. There was a guy on there that was having all these bizarre symptoms, and I was like...it sounds like he has Lyme. Well, I kept watching, and he totally did have it! It was pretty interesting. At the end they had a physician on talking about it a little bit, then they did a follow up with him. After antibiotic therapy for a year and a half, he was back to normal. Three years after his ordeal started, he said he was back to 100%. It was really encouraging to see that! I got my treadmill set up this week, and my goal for this next week is to walk everyday -- even if it's only 3 to 5 minutes. I think it will make me feel better knowing that I'm doing something. All-in-all, this has been a great week for me, and I'm very optimistic about the future.

NEXT!!

So much has been happening in my life lately as a direct result of having Lyme. So many people have told me that they think I'm being incredibly optimistic. I guess I just see it as my only choice. Of course I would rather not be dealing with all of this, but the reality is that I AM. I want to be able to get through this in the best way possible, and seeing the good things in my life throughout the process. I'm trying to be open to all the changes and embrace what's going on, so that I can move forward to the NEXT phase of my life once things have calmed down and returned to normal (or something like it.)

I went back to Seattle two weeks ago, and I've gotten new prescriptions. Right now, I'm taking the same antibiotics, (Doxycyclene, Plaquenil & Biaxin) but we added in Cortex (which stimulates the adrenals -- hopefully giving me a temporary boost of energy) and a lovely anti-malarial suspension called Mepron. It's as thick as tempra paint, and bright yellow. Very interesting...my doctor thinks that by adding in the Mepron right now, we can address the two different strains of Babesia, which is probably adding to my extreme fatigue. I'm on pediatric doses of all of the above, because my doctor says I'm "so small," which I interpret to mean SHORT...hahaha. Also, we don't want to overdo the meds and make me sicker than what I have to be!

I had an incredible burst of energy two days ago, where I was up first thing in the morning, created a budget, (my new retirement budget, heehee) cleaned my kitchen, rearranged some things in my living room, packed some boxes and made a pot roast. This was amazing, because most of the time it's all I can do to get up and do one or two quick things around the house in the entire day. I've learned, though, that when I'm feeling good, I need to take advantage of it! I've also learned not to overdo it, because sometimes I pay for all that extra energy over the next two days as my body protests over the exertion my muscles aren't used to.

Speaking of muscles, I'm in the middle of reorganizing my house, (with the help of some wonderful friends) and I'm changing my dining room into my personal gym. I'm hoping to be able to start using my treadmill again, maybe only 3 to 5 minutes a day at first, but something will be better than nothing. I'm also going to try to do some really light weight training, which hopefully will help a little bit with my muscle weakness over time. One of the most frustrating things in all of this, is that I just haven't been able to get things done the way I used to. I'm learning to rely on others for help, and I'm also learning how to let go and let things get done when they get done. It's hard though, because things seem so crazy right now! Patience, patience, patience...

Overall, I'm feeling optimistic about everything, and I've been thinking about specific goals that I want to set over the next three months so that I have something to look forward to as I start feeling better. I want to go visit my friend in South Carolina, and I'm thinking about a couple classes I would love to take if I can figure out how to do it...I would love to take the Wilton Professional Cakes class at their school in Chicago...I know it sounds crazy, but I love doing cakes. The class is only 9 days, so if I really do get feeling better (and my hands get better) in the next couple of months, I might do that before I go back to work.

Before I started SkinScience, I had wanted to get much more involved in the medical side of our industry, and I think in a few months, (when I am feeling better) it might be fun to start back into things by maybe working part time at a medical spa or with a physician. I have worked with a plastic surgeon in the past, and it might be fun to get back into that at some point. We'll see. I'm going to stay focused on future options and possibilities, and take advantage of the next six months as a time to figure all of that out. I feel blessed and grateful for where I am in my life, and that Heavenly Father is taking care of me, and has made allowances for everything that's going on right now.

This Week's Update

So, I think I'm getting worse. My fatigue has been so bad I get out of breath walking from my bedroom into my kitchen, and the weakness in my arms and legs makes them feel like they weigh 50 pounds each. I think I am feeling better about all of this than I was last week, for sure. Thank goodness that that's getting better. I am trying to remember what my doctor said about my getting worse before I get better...getting really sick means that the treatments are working! Woo Hoo!! I have another doctors appointment with my specialist in Seattle on Monday, so I may have another update at that point. 

My sister-in-law discovered a tick crawling on her two-year-old's jacket last week, during an outing only a few minutes from their house. Because they are aware of what has been going on with me, they understand the danger associated with ticks. Ticks can be found anywhere there are deer, particularly areas that get a decent amount of rainfall. For more information on how to avoid a tick bite and possible exposure to Lyme, read through my previous post, "An Ounce of Prevention." I am making it one of my personal missions to help other people avoid having to deal with what I'm going through right now. Please take a moment to read through it!

Today

I'm feeling better this week than last, but today is not a good day. :( Still, I am grateful for progress, however slight it might be. Last night my neighbor came over to check on me and she brought me a DVD about Lyme called "Under Our Skin." She had mentioned to her son that I had Lyme, and he had sent it with her for me to watch. I actually already have it, it's very good and very informative. I was really surprised that her son had it, because it seems like such an obscure topic. Anyway, if you are interested in learning more about Lyme, I would highly recommend it.

Up and Down...and Venting

So this past week I've had a hard time dealing with what's been going on. The antibiotics and other meds are definitely helping. I'm doing a lot better than I was three months ago. But it's still very much a day to day thing, and I guess the whole business of being sick (in bed sick) for the better part of six months now is starting to take it's toll.

Don't get me wrong. I'm grateful to be having better days, and to see the light at the end of the tunnel. It's just that when I have energy and minimal pain on Monday, I expect to wake up on Tuesday feeling perhaps even a little bit better than the day before. When you're recovering from a cold or the flu, that's how it usually goes, right? Right. Well, when you're dealing with chronic illness it's so discouraging to wake up the next day only to realize you're feeling way worse than you were the day before.

In the last six months I have had friends that have had the patience and thoughtfulness to come to my house or take me on outings when I am feeling ok, which has really helped me not to become depressed. Hopefully, when I start finally feeling better, I don't want to have to look back and see that I've lost out on two years of my life to being sick...I've already been dealing with this for over five years, and while I did my best to muscle through all of that, I realized that somewhere along the line I've forgotten how it feels to really feel good. Most of the time, especially if I'm concentrating on it, I can pretend that I feel ok, and make the best of the situation. But the in and out daily monotony of waking up, starting my out-of-control pill regimen, and basically laying in bed hurting all day is starting to wear on my positive attitude. 

Yesterday I got an invoice in the mail for $3100.00 for lab tests required to get a diagnosis. My insurance has refused to cover any of my treatments, so I've been paying for everything out of pocket, and so far since I was diagnosed in January, I've spent over $7,000.00 up front in cash on this...that doesn't include those lab tests. Wondering why my insurance wouldn't cover this stuff? Watch this clip. It's all a little overwhelming...but I know that somehow things will work out, they always do. The worry over finances probably only adds to my melancholy mood tonight. 

If you're wondering exactly how devastating Lyme can be, watch this short BBC Clip describing the Lyme Disease problem in Britain. Or this one, by Turn the Corner Foundation, a Lyme advocacy group dedicated to Lyme research & education.  Clearly, not getting treatment is not an option...it's a catch 22 if I ever did see one.

I am beginning to develop a lot of empathy for people who deal with devastating illnesses like cancer, and all the implications that are involved. The physical pain and symptoms are manageable most of the time; the endless medications (which make you sicker) are manageable most of the time; the financial strain is manageable most of the time. But put all of these together, combined with people's lack of understanding of Lyme (and therefore lack of sympathy or concern) in general, and at times it does seem to be an insurmountable situation. 

An Ounce of Prevention or a Pound of Cure

Lyme disease has been reported in all 50 states, and is most common in areas with woods, mice, deer and humans all residing in close proximity. While it can be a very serious disease, it's relatively easy to protect yourself and your family from being infected in the first place. 

1) Check for ticks

After working in the yard, hiking, hunting, fishing, camping, playing at the park or engaging in other outdoor activities, always do a "tick-check" when you're done. This includes both looking for ticks, but also running your hands up and down in both directions over your arms, legs & trunk. Have someone help you check your back, neck & scalp. Ticks are tiny, (the size of a poppy seed or smaller) and can look like a tiny, raised freckle, so make sure you look closely. How does this help? Experts believe that ticks have to be attached to you for at least 24 hours before they are able to infect you with the Lyme bacteria, so doing a tick check several times a day while engaged in outdoor activities is the best way to ensure that you won't be infected. 

2) Go long, or stay home.

While it's not always plausible, experts recommend wearing long pants and long sleeved shirts when hiking, camping, hunting or fishing to keep the ticks out. Further, they recommend tucking your pants into your socks, or using rubber bands to close off open pant legs. At the size of a poppy seed, you don't want to give these critters even one inch to make themselves at home...giving up the outdoor fashion statement is a lot better than giving up your good health...possibly for the rest of your life.

3) Use bug spray with DEET.

DEET can cause problems in too great quantities, so be careful with this one. I know a guy that became deathly ill on an African Safari, and after several months of tests back here in the US, they discovered it was DEET poisoning. This should not be an issue for the occasional family camping trip or the annual hunting trip. Personally, I would rather take my chances with the DEET poisoning, than deal with Lyme disease. Just as DEET products help guard against West Nile Virus by repelling Mosquitos, so too it repels ticks. Use it. You can buy it at WalMart.

4) Stay away from tick hotels.

Avoid tall grasses, (including sea grass) underbrush, weeds or other types of vegetation that are overgrown. When hiking in the woods, avoid brushing up against branches, grass or underbrush hanging in the trail, as this stuff is a favorite tick hang out. Don't kick, play in, or under any circumstance, roll in fall leaves. Make sure your kids understand this as well. Ticks love dead leaves and they are very opportunistic. When hiking, camping, hunting or fishing, DO NOT SIT AGAINST OR ON TREES OR TREE STUMPS. You may as well roll out a welcome mat. Ticks live in the bark of trees, and by doing these things, you are literally walking up to their front door.

5) Watch for rashes.

If, after any amount of time outdoors, you develop any sort of a strange rash, you should go to your doctor. Most people believe that Lyme disease causes a "bulls-eye" rash, but this is true in only about 30% of cases. Far more people develop solid, raised, red rashes, round or oblong shaped, that don't itch or burn. Most of them are large, with a circumference of more that 4". If there is any question about a rash, you should go to your doctor. Keep in mind that most doctors will not recognize a rash as being Lyme related unless it is a bulls-eye, so you have to be insistent that a test be done. Request to have a Western Blot done, which is far more accurate than the commonly used ELISA test. Since most people will not have enough antibodies at this stage to get a positive result, most Lyme specialists will do the antibiotics as a precautionary measure.

Since the rash is the skin's reaction to the very start of the bacterial infection, if you are treated with the standard two weeks of doxycyclene while the rash is still present, your chances of never developing full blown Lyme are very, very good. By the way, I went to a doctor in September 2003 for my rash, and was told it was an allergic reaction to something. Had I known about Lyme back then, and insisted on a test, I could have avoided years worth of illness, as well as the time and expense of trying to get better.

6) Be aware of the symptoms.

There are many people with Lyme disease that have no recollection of having been bit by a tick, or ever having had a rash. These people are usually the ones that take the longest to be diagnosed, thus giving the bacteria a free ticket to move about the body at will, wreaking havoc by doing two different things. First, the bacteria themselves release neurotoxins as part of their normal function. In late stage Lyme, the effects of this build up of neurotoxins can be dramatic and devastating. Secondly, the bacteria drop pieces of their protein lining all over the body's tissue as they migrate to different areas. Some scientists believe that this is one of the reasons for the extensive inflammation attributed to late stage Lyme, as the immune system tries to seek and destroy these proteins, and ends up attacking it's own healthy tissue. 

The most common symptoms of early Lyme are joint pain & swelling, muscle aches, weakness, fatigue (varying from mild to severe), unexplained fevers, and sometimes confusion and short term memory loss. In late stages, Lyme is often misdiagnosed as Chronic Fatigue, Fibromyalgia, Lupus, MS, Parkinson's, ALS (Lou Gherig's Disease), and Alzheimer's. Obviously, by looking at that list, you can see how devastating this bacteria can be when allowed to take over. I have a list of my own specific symptoms in the post, "Lyme Symptoms."

I think I could have avoided getting Lyme in the first place, had I known about it at all, what to look for, and what to avoid. I had heard of Lyme, but had no clue about what it actually did, or what it would look like in real life. Hopefully, through my own experience, caused by lack of knowledge, I can help other people avoid coming down this same path.

You Tube Video

You may have noticed that I've posted several videos (to the right) from You Tube. These are videos that I've found that I think offer a good brief synopsis of the whole Lyme picture. The main three I've selected are consecutive news reports about Lyme done by a news anchor that suffered with it for several years before discovering what was going on. If you have a few minutes, I think they're pretty interesting. Just a note, sometimes random stuff comes up, but the main one I wanted to share was the three part news story. 

I'm going to try to offer more content about Lyme education for awhile, and less about me...hopefully this is helpful. :)

Lyme Symptoms

Because Lyme is a bacterial infection caused by a spirochete, or spiral shaped bacteria, it is able to essentially drill through tissue, allowing it to spread virtually anywhere in the body. Because of this, Lyme can cause all kinds of different symptoms involving all the body systems. This can add to the confusion and delay in diagnosis, because most physicians aren't able to connect the dots of all these seemingly unrelated symptoms.

Most of these symptoms start out mild, and usually "wax and wane" meaning they come and go, sometimes completely resolving for a time, only to return with increased intensity sometimes months or years later. My symptoms followed this same pattern, usually in a 3-4 month cycle. Each time they came back, they got a little worse, with new ones added each time. Adding to the mystery, some would come and go frequently, but others would crop up for a month or two, then completely go away, and never return. For almost three months in early 2008, I got sick anytime I ate anything. There was no obvious reason for this, and after about 90 days, this peculiar symptom went away and I've never had it since. 

It really does make you second guess yourself and what you're feeling, and it's easier to understand why some doctors react skeptically when you're explaining all these bizarre symptoms.

Over the last five years some of my symptoms have included:

extreme, debilitating fatigue

muscle aches & weakness

headaches, sometimes lasting 4-6 weeks

unexplained low-grade fevers

night sweats

joint pain and swelling

stiff neck

dizzy spells

swollen glands

neck & right shoulder “locked up”

frequent sore throats

severe stabbing abdominal pain (I've had appendicitis, it's similar)

difficulty focusing

inability to complete sentences

heart palpitations

nausea

loss of appetite

stomach problems

short term memory loss

numbness and tingling in limbs (particularly my right arm & leg)

vertigo (this lasted for almost two months)

anxiety (especially in social situations, never before a problem for me) 

frequent infections & low immune function

general feeling of being unwell

Antibiotic Update

Ok, I've been taking antibiotics now for 12 days, so here's a quick update. To begin with, I was taking one dose of doxycyclene in the morning. I was pretty sick, with more fatigue and muscle aches than usual, and even the same abdominal pain that I was having last fall. The abdominal pain lasted for 3 or 4 days, but the fatigue and muscle aches were pretty consistent for the first seven days. On the eighth day, I added in a second evening dose of the doxycyclene, so now I'm taking it twice a day. That was last Thursday, March 12th. I noticed an almost immediate (literally the next morning) burst of energy. When I say "burst" I really do mean it. All weekend I felt like I had almost endless amounts of energy, especially in comparison to how I've felt over the last 5 or 6 months. My joint pain, muscle aches and weakness have continued, but it sure is great to have the energy to get up and do things that I need to do.

This Thursday I will add Biaxin twice a day into my routine, and then I will add twice daily Plaquenil into the mix seven days after that. When I've completed this initial "ease-in" period, I'll be taking doxy, Biaxin & Plaquenil twice daily all at the same time, in addition to about 40 other pills (mostly supplements like probiotics, etc.) hourly throughout the day. I'm excited for the continued energy, and at the same time a little nervous about possible side effects. I'm learning to take one day at a time and appreciate the days when I feel good. The last few days have been great for helping me to see that there's light at the end of the tunnel, and that I really can feel good again. I can't even hardly stand to wait!!

Can I Complain?

So today I ventured out of my house for the first time since I got back from my trip to Dr. Seattle, except a really quick trip to the pharmacy to fill my prescriptions. Right now, I am still dealing with pretty bad fatigue, muscle aches and painful joints, (especially my hands & knees.) As a result, I have two speeds right now: slow and slower. 

Since I was almost out of groceries, this afternoon I decided to make a trip to Costco, list in hand, in an effort to be as quick as possible. Why Costco you ask? Not exactly a quick stop, ever. Yes, but they have a large selection of Gluten-free and organic stuff, along with great produce, and all for pretty great prices. Anyway, so I decided to brave the huge warehouse grocery store around 2pm, trying to avoid the crazy crowds. 

So there I am, gimpy little me, trying to push a huge cart around. This is the worst part of grocery shopping for me right now. It just makes me really, really tired. Anyway, at Costco I usually do a loop around the store, grabbing things from my list. After I was about half way around, with several items in my cart, all of a sudden the wheels on the cart totally locked up, and I was struggling to push the cart. Let me be clear here: I had already been struggling to push the cart around, now it was all I could do to get it to budge. I tried to figure out what the problem was, but I couldn't see anything...so, already really slow behind a shopping cart, I became even slower.

I was exhausted, too tired to go back and find a new cart, but exerting too much energy trying to push a cart that wasn't cooperating. It was also obvious that I was ticking off fellow shoppers with my snail-like speed. It's a horrible feeling when you are literally not able to do something, and instead of trying to be helpful, other people get mad at you. I was on the verge of tears, and ready to leave without my groceries, when miraculously whatever had caused the wheels to lock up immediately went away. I dunno. So I hurried, (as fast as I could) to get the last few items and get out of there. 

As I was trying to push the cart out to my car, there were two more incidents of people being rude because I was being slow. I really hope that these people had good reasons for their obvious and seemingly disproportionate frustration, like a family member in the ICU, or perhaps a wife in labor? I know I'm slow, and it's frustrating to me. But can't people be a little bit patient? 

After my humiliating shopping trip, I've recommitted myself to being nice to people. I know I don't necessarily look sick. I'm sure this adds to people's frustration with my slow and slower speeds...but you just really don't know what's going on with anyone. I'm realizing that I have the opportunity right now to learn all kinds of lessons about patience, compassion and understanding. I'm trying to remember them, and hopefully in the future I will remember that when I'm in a hurry at the grocery store. 

Where Did I Get This?

When I first started looking at Lyme as a possibility, I had no idea when or where I would have picked it up, having no recollection of ever having had a tick bite or rash. But as I have researched more and more, I am pretty confident that I know exactly when I got it. 

First, a few facts:

Ticks that can transmit Lyme to humans are in the nymph stage of their two-year life cycle. At this stage, they are usually about the size of a poppy seed, but can be as small as the period at the end of this sentence. 

Ticks like to hang out on blades of grass, the bark of trees, and ends of branches, waiting to latch on to unsuspecting passers-by.

Most Lyme rashes are not the well-known "bull's eye" that everyone associates with Lyme. In fact, the majority of reported rashes are nothing like that. One of the rashes that can indicate Lyme is a large, solid, oval-shaped, raised rash at least 4-5" in diameter that doesn't itch or burn. 

Rashes generally appear 10-14 days after a tick bite.

New England, particularly parts of Connecticut, Maine, New York and Massachusetts are considered endemic for Lyme Disease. Cape Cod is one of these places. 

The initial symptoms of Lyme (after the rash and immediate flu-like symptoms that occur in the first couple of weeks following a bite) begin to occur within 6 months to one year of an infected tick bite. 

How This Applies to Me:

In the summer of 2003 I spent 6 weeks in Boston, MA with my mom. We were there for her to get treatment for cancer at Brigham & Women's Hospital. While we were there, at the end of August, we visited Cape Cod for the day. This included a trip to the beach where we enjoyed the picturesque views and took a lot of pictures, including a few in the sea grass. 

About two weeks later, on September 11, 2003, (I remember the exact date because it was September 11th) we were back in Coeur d'Alene, Idaho. As I undressed to shower that evening I noticed a large, red, raised rash on my hip. It was probably 6-7" in length and 4-5" high. It didn't itch or burn. I showed my mom, who encouraged me to see the doctor. When I did go to the doctor, the rash was dismissed as an allergic reaction of some kind, possibly to laundry soap. I remember seriously doubting that at the time, but not knowing of any other plausible explanation, I let it go. 

My first strange symptoms, (that I've had on and off for the last five years) began in January of 2004. Random low-grade fevers, usually at night, coupled with night sweats, frequent sore throats, and mild joint pain & swelling, all combined to cause me more than a little concern. When I went to the doctor about these and other symptoms including heart palpitations and thinning hair, (I know it's hard for some of you to believe, but my hair used to be much thicker) I felt completely dismissed. 

My mom had died in late December 2003, less than a month previous, and the doctors felt that I was having anxiety associated with what they described as the fear that I had cancer, too. At the time I remember thinking sarcastically that fevers could not be triggered by anxiety...but I didn't say that to the doctor. Initially, back in 2004, as my symptoms and doctors visits continued, I was put on a couple different anti-depressants. They didn't provide any relief from the symptoms, and I soon quit taking them. Over the last five years, as the symptoms have not only continued, but have gotten progressively worse, I have continued to feel dismissed by doctors. I think the timing of all of this probably made my journey to a diagnosis a lot more difficult, although most people with Lyme are routinely misdiagnosed for several years. 

When I went to my appointment on Monday to get my test results, the doctor told me that I had the East Coast Lyme profile, (infected ticks from different geographical areas carry different co-infections...other tick-bourne bacteria that can help to determine where a person became infected. East coast ticks carry Erlichia, west coast ticks carry Rocky Mountain Spotted Fever, etc.) She then quizzically looked at me and said, "But you've never lived on the East Coast." I then explained the six weeks I had spent in Boston, and her chin nearly hit the floor. After explaining the other details I listed above, we are both convinced that I got this in late August 2003. 

The good news is that I've only had this for five years. Sure, it's longer than what you would hope to have these bugs in your body, trying to take over. But it's not as long as what the doctor had originally thought, and that's great news. It means I have a very good chance that we'll be able to resolve and reverse all of the symptoms, perhaps within the next six months; AND that I have an excellent shot at making a full recovery, within possibly the next two years. I'm absolutely elated at the thought of getting my life back. 

A Clinical Diagnosis

Some of you may wonder why I've been on treatment since January, but I just got my blood work back this week. That's a really good question, and one which I have read a lot about, so I'll share a little bit about what I've read. 

For the most part, diagnosing Lyme is based on clinical data, (things the doctor can observe like symptoms & medical history) more so than blood tests. This is due to several different factors, but mainly because the tests for Lyme are not fully reliable. It's also further complicated by the fact that after you've had Lyme for an extended period of time, the immune system in certain individuals becomes so overwhelmed that it simply gives up, and quits producing antibodies. 

Blood Tests for Lyme

So, as I stated above, the tests for Lyme are not fully reliable for several reasons. First, they're not very accurate, ie., 30-50% of people that actually have Lyme will test negative for the Lyme antibodies due to problems with current testing methods. The only tests available right now test for presence of the Lyme antibody. Unfortunately, in people with weakened immune systems, (which applies to most people with Lyme) the immune system may not be producing enough antibodies in order for them to be picked up by the test, which is not very sensitive.

Additionally, as I also mentioned above, the body may no longer be producing antibodies after late disseminated or chronic Lyme disease has set in, causing the test to come back negative in an individual who may in fact not only be positive, but in all actuality also be extremely ill. 

Clinical Data

For these reasons and others, physicians who specialize in Lyme rely not only on the test results, but also on the clinical data. When I met with my doctor for the first time we spent two hours going over my medical history including current & past symptoms, past tests, past diagnosis & past treatments. We also covered my interests and outdoor hobbies, in order to determine the risk & possibility of past exposure to Lyme disease. 

If, based on your medical history, symptoms, and risk of exposure, the physician can establish a high probability that Lyme may be the culprit, they may choose to begin treatment, as my doctor did. With Lyme disease, time is of the essence, and any delay in treatment can lead to further dissemination and the appearance of additional, unnecessary symptoms. 

My physician opted to begin treatment immediately, by putting me on supplements that would help to start rebuilding my immune system, as well as anti-bacterial and anti-microbial medications that would help to prep my body for antibiotic therapy, which would begin once my blood tests had come back. The blood tests included a complete work up of my immune system markers, detailing my body's ability to fight infection. This also provides a lot of information about what the body has been fighting as well. 

It's interesting to look at the roughly 30 pages of test results, most of which I don't understand. There are a few actual photographs of my microscopic blood smears on slides, showing the actual bacteria that has been making me sick. It was extremely interesting, but a little creepy at the same time.

An Official Diagnosis...FINALLY!

So on Monday I got the results back from all my blood work. Remember those 24 vials of blood they took in January? I'm not sure that I've ever been so nervous, apprehensive or anxious to go to a doctor's appointment.

Before I get into the results, I would just like to remind everyone that none of these bugs are contagious, unless I bite you and bleed on you...so since I'm not a vampire, don't be afraid to visit. :)

Both tests that were done for Lyme disease came back positive, which means I am a certifiable Centers for Disease Control (CDC) confirmed case. Congratulations me!!

I also tested positive for several co-infections. Co-infections are other bacteria that ticks carry in addition to Borrelia Burgdorferi (the Lyme bacteria.) My doctor said that most patients with Lyme have one or two co-infections. I ended up with several, including two different strains of Babesia, which is similar to Malaria.

These are the co-infections I tested positive for:

Babesia Microtii (infection of the red blood cells)

Babesia Duncani (infection of the red blood cells)

Erhlichia (infection of the white blood cells)

Hemobartonella

Chl. Pneumonia

Herpesvirus 6 (a respiratory infection similar to pneumonia)

I also tested positive for:

Epstein-Barr Virus

Human Parvovirus

HLA Haplotype (associated with Narcolepsy...hahaha)

So basically, the test results show that I'm a walking petrie dish filled with bacteria.

They also did a full screen of my immune markers, which helps to show how my immune system is doing with fighting all of this stuff. Understandably, the results showed that my poor little immune system is pretty overwhelmed, and a couple of the numbers rank me among HIV or chemotherapy patients in terms of my immune function.

Mostly, I'm just feeling relieved and validated that there is a reason I've been feeling so horrible for the last 5 years! My doctor said she is amazed that I have been able to be up and around at all given what my body's been dealing with. I'm actually relieved to finally have some solid answers about what's been happening to me and why. The better news is that there's treatment for it. I also feel very blessed to have stumbled onto all of this, but more about that later.

A Lot of Answers

In the last 24 hours I've gotten an overwhelming amount of information about all of this --by that I mean about Lyme disease and particularly about how it applies to me -- which has been a huge relief.

I have literally just gotten back from my trip to Oregon, where I stayed with my brother Grant, who has been kind enough to drive me up to see the doctor in Seattle, about two and a half hours north of Portland. 

I'm pretty worn out tonight, but hope to add a few more posts tomorrow updating all the information...I'm relieved and encouraged by what I found out. 

How is Lyme Disease Transmitted?

Lyme Disease is transmitted through tick bites. Yes, you heard me correctly. Ok, I'll be honest. I've had a hard time coming to terms with the fact that I have an illness caused by a tick bite. All seriousness aside, it's just...well, just so....redneck. But all joking aside, because of what they could possibly be carrying, ticks are serious business, and they deserve some serious respect. 

So, Lyme Disease is most commonly transmitted through the bite of a tick, usually a deer tick. These are not the same as ticks that are generally seen on dogs, which can often be much larger than deer ticks. Dogs, of course, can also host deer ticks...but if you've ever pulled a tick off a dog, usually they're much bigger than the kind of tick that a human would be able to miss.

About 10 years ago, our Golden Retriever, Buddy, picked up several ticks on an overnight backpacking trip to Siouxon Falls in Washington State. By the time we discovered the ticks four or five days after the trip, they were engorged with blood, and each of them was the size of a large honey bee. Obviously, if one of those were attached to you, it would be hard to miss. 

Deer ticks are very small insects, although I had no idea how small. Deer ticks can vary in size, but generally speaking, a full grown tick is around the size of a sesame seed. Unfortunately in the nymph stage, (the stage where a human bite is most likely to occur) they are as tiny as a poppy seed, or even the period at the end of this sentence. Like most people, I had no idea they could be so small. In addition, when they bite, they release an anesthetic of sorts, numbing the area of attachment. They also release an adhesive-like substance around their body, so that they are held in place as they feed. From what I've read, they usually look like a tiny raised freckle. 

Ticks are very sensitive to dryness, so in dry weather they burrow into tree bark or hide under leaf litter. They much prefer damp weather, and in climates with more moisture they like to hang out on the tips of branches or blades of grass along trails, like hitch hikers. As unsuspecting humans or animals brush up against foliage on these trails, the ticks can cling to clothing or fur, and then after exploring their new host for almost 24 hours, they find a comfortable place to attach themselves and begin feeding. They are miniature vampires, literally sucking the blood of their host, and if undetected they will remain on a host for up to 5 days. 

Understanding all of this, it's easy to see how it could be possible to miss a tick. I don't remember ever having been bitten, but I've spent enough time outdoors (both in the Pacific Northwest and New England) to easily have been exposed to ticks carrying Lyme.  

5 Days In...

For those of you that might be wondering about it, when I went to see the doctor and was diagnosed with late stage Lyme, she told me, "You've got a really long road ahead of you." Hence, the name of my blog. :)

Today is my fifth day of treatment, and I'm doing ok. I'm taking about 30 different things, at eight different times throughout the day. Surprisingly enough, I'm getting used to it, and it hasn't been as bad as I'd anticipated.

I've also been officially off sugar, dairy and gluten (which includes wheat, oats & barley)  for almost a full week. I'm amazed about this, because I'll be honest, when I first found out that I had to eliminate these things completely, I was really discouraged. I think it would be difficult for most people to eliminate one of the three completely from their daily diets...with all three it's like, what do I eat?? With the help of some resourceful friends, and a thorough search of WalMart and Costco, I've come up with some good options for now. Obviously I can have all the fruits and veggies I want. And the other stuff will become more familiar and easier with time.

I have noticed significant improvement in the swelling in my hands, and my joint pain has improved substantially, it's still there, but I don't have to hobble around the house right now. I've also got a lot more energy. I feel alert and awake, which is unusual for me in the past few months. The last two days I've been able to wake up without an alarm clock at 7am. That hasn't happened in several years!

Anyway, I'm not sure if these things have to do with the diet, supplements & medications I've begun, or if it's just part of the natural cycles that have been happening all along. For the last several months I've noticed that I will have 2 or 3 "good" days -- days where I have more energy and less pain than others -- and then I will have 4 or 5 "bad" days -- these are the days where it's hard to get out of bed. It doesn't really matter...I've enjoyed having the energy and the slight reprieve from the pain. Whoohoo!

I scheduled my next appointment yesterday also. I'll see the doctor again on Monday, March 2nd. That's when I'll start antibiotic therapy. I'm not really looking forward to that, since I haven't heard fun things about it. But at the same time I'm told the antibiotics are what really help, and after you've made it through the first few months, you feel significantly better.

What is Lyme Disease?

I think most people have heard OF Lyme Disease, and yet most of us have no idea ABOUT Lyme: what it is, what the symptoms are, and the chaos it can create in the body. I have spent the last six weeks reading everything I can about Lyme, and I'd like to share some of the most interesting things that I've found.

Lyme Disease or LD is primarily an infection caused by a bacteria, Borrelia burgdorferi or Bb. The bacteria is a spirochete (pronounced spy-row-keet) meaning it is spiral or corkscrew shaped. These nasty little critters are pictured below. 

 

Because the bacteria is shaped like a corkscrew, it is able to literally drill through tissue. This allows the infection to spread to almost every part of the body, infecting multiple organs and causing a wide range of symptoms. 

The most well-known symptom of Lyme is the characteristic "bulls eye" rash that may develop soon after a person is bitten. While the rash is well-known, not developing a rash is not a clear indication that you're not infected. Interestingly, research now shows that less than 50% of people who tested positive for LD ever recall developing a rash or even being bitten by a tick. 

Other symptoms of early Lyme include fever, fatigue, headache, and depression. Left untreated, late symptoms can involve the joints, heart, and central nervous system. Most of the literature I have read puts an emphasis on the commonality of ongoing, profound fatigue, foggy thinking and pain in the joints and muscles that is persistent over years of time. Because of the severity of the symptoms in late stage Lyme, many patients are often misdiagnosed as having MS, ALS, Parkinson's or Alzheimers.

The Treatment Plan

I started treatment on Monday, January 26th, with 30 different pills taken at eight different times throughout the day. Needless to say, I'm feeling a little overwhelmed. In addition to all the pills, I will have to eat gluten, sugar and dairy free in an effort to increase the efficacy of the treatments, help boost my body's own ability to heal itself, and minimize negative side effects of the medications I'll be taking. I'm supposed to do 2-3 days of light weight training each week. In the past, this has been simple and something I have enjoyed doing...however feeling the way I do now, it seems like a tall order. 

I will start antibiotic therapy when I go back to see the doctor in another 4 weeks.  I will be doing combination therapy of four different kinds of antibiotics, administered daily both orally or IV, they have to see what I need specifically. They won't know that until all my blood tests are done. The therapy can last for several months or longer, depending on how I respond. I will be on treatments, (antibiotics, medications and supplements) for 3 to 5 years in all likelihood.

The treatments are going to make me really sick (supposedly I'll feel like I want to die...that's funny, I thought I was already really sick...haha) for the first few months, but then I will start feeling better and should start to see improvement in energy and some of the other symptoms that I've been having. The doctors that are doing this have had great success with it and the treatment is about 90% successful with most symptoms resolving, so I feel like I'm doing the right thing for me. 

Getting a Diagnosis

On my friend's recommendation and my own research over a month's time, I decided to travel to Seattle to visit a doctor that specializes in Lyme and other related infections. After speaking to the doctor several times on the phone, I made the appointment and booked a plane ticket. I continued researching as much as I could about Lyme Disease, trying to sift through all the information and misinformation that's out there. 

Last week, I flew to Seattle to meet with the doctor. For two hours we went over my medical history in great detail. We also went over where I had lived, my outdoor activities, where I have traveled and other risk factors that might help determine my likelihood of having contracted Lyme. She also tested my reflexes and motor skills in addition to a traditional physical exam. The doctor said that based on all of the clinical data (things the doctor can observe), I was a classic case of what they call "Late Lyme" because they think I have had it for at least 10-15 years in order for it to be advanced enough to be causing so many symptoms that affect so many different body systems. In order to determine exactly where I'm at and how to proceed, they took 24 vials of blood to test all sorts of things from immune markers to the possibility of other infections or complications.

I was pretty shocked at first, but in reality I'm glad to know what's going on and I'm anxious to try to start addressing it. The treatment plan I've decided to follow is controversial, but I've done a lot of research and I feel it's the right thing for me. 

A Little Background on Me

If you've known me for a long time, you know that I've pretty much had medical problems since literally the day I was born. The last ten to fifteen years in particular have been difficult with lots of strange and crazy things happening with my body. Since 1995, I have had 9 surgeries, most of them unrelated and for the most part not serious. I've just always felt that Heavenly Father thinks I learn important things through being sick. It's been the story of my life. In 1995 I had a kidney removed, and since then it's seemed like my immune system just hasn't wanted to work right. I know that they're not directly related, but it's been since about then that I've had all kinds of strange things going on, and it seems like I've been constantly sick with colds, flus and other bugs. 

Over the last four to five years, however, I've been to multiple different doctors for a whole laundry list of symptoms. I've had recurring bouts (usually lasting about 6-8 weeks) with arthritis, fevers, chills, night sweats, muscle aches, extreme fatigue, nausea, vertigo, headaches, sore throats and other strange symptoms. I also have hardly any immune system to speak of, and I seem to get anything that's going around. 

In addition to all the different doctors, I've been in to the ER for severe abdominal pain several times a year for the past four years as well. The doctors always run lots of tests. Blood panels, ultra sounds, MRI's and CT scans. I've been tested for everything imaginable, and even sent up to the Huntsman Cancer Hospital to have my liver scanned using advanced equipment...that was a little scary. After all the tests, it always ends up with them sending me home with the same thing: a prescription of pain meds and no diagnosis. 

During this whole process, one of the most frustrating things for me has been the unwillingness of the doctors to look at my entire health history to try to figure out what is going on. I've been having most of these symptoms on a recurring basis for years, with each recurrence getting a little worse, and with new symptoms appearing. To me, it all seemed somehow related, and yet none of the doctors I saw, (NONE OF THEM), were interested in discussing what happened six months ago, let alone six years ago. 

Over the last four months in particular, my symptoms have seemed to be escalating.  In late September of last year I noticed that my arthritis was getting worse and the fatigue was coming back. By mid-October I was having severe abdominal pain again and was nauseated constantly to the point of being unable to keep food down. Since then I've been to six specialists, the whole time making no progress towards an explanation, while continuing to get worse and worse. I've gotten to the point where 3-4 days a week I am in bed the entire day because I literally don't have the strength to get up, and I am in constant pain. I have also started having fevers again, usually in the evening, usually 2-3 times a week.

In mid December, I was quickly getting to the end of my rope. After having seen all the different specialists, an additional round of tests including exploratory abdominal surgery and a complete GI work-up (this included a colonoscopy and endoscopy...yeah, that was fun) the doctors were still baffled. As my symptoms (all of them) continued to get worse, the doctors recommended regular lidocane shots in my abdomen to deaden the nerves that they thought were causing the pain. What....? What about my other symptoms? 

During all of this, a friend of mine that I literally hadn't talked to in at least 10 years contacted me on Facebook and asked about what was going on, since she had seen so many people commenting on my health. After a brief conversation about things, she suggested I look into Lyme disease as a possibility, and consider being tested for it. I'll admit that my first reaction was to brush the idea off. Everyone has opinions and suggestions, especially in a situation like this. I had heard of Lyme, but had no idea what it was or what it did.

However far-off I thought the suggestion was, I agreed to read some links to articles that she emailed me. As I read through the first article, I couldn't believe what I was reading. It seemed as though the article could have been written about ME. All the symptoms I was having, everything I had been tested for, all the things I've been "diagnosed" with over the last ten years were in that article. I continued to read the other information and felt even more strongly that in the very least I did need to be tested for Lyme.