Happy Fall!

With the coming Holiday season, I always love to sit back and count my blessings, and they are many. Life is wonderful, even with all it's challenges. This has been an interesting year with lots of learning experiences. First, as newlyweds, my husband and I have been working on starting to build our life together, and in September we celebrated our first anniversary. We have had a wonderful first year of marriage, and I feel like I have no bigger support or loyal partner in my fight against Lyme disease than I have in my wonderful husband. He has been my rock and is the biggest  blessing in my life. His patience and support through the ups and downs of treatment has been unwavering. His understanding of my physical, emotional and sometimes cognitive limitations has allowed me to be able to handle all of these things in a more positive way, although sometimes it has been extremely difficult. I'm sure it's been difficult for him, too, but he's never shown it. I am truly blessed.

The biggest news for me lately, is that we have recently decided to try a new approach to battling Lyme disease -- along with my current regimen -- and I'm not sure that I've felt this excited about possibilities the entire time I've been sick. I've researched this option and have personally talked to several people that are using it with wonderful results. Each one has had Lyme disease for varying stages of time, ranging from several months to almost 20 years. I have been very encouraged in discussing various symptoms, treatments and complications, all of which are very familiar to me, and in hearing of positive results and the one thing I feel like I haven't had much of since this strange odyssey began: HOPE. I want to see how it works for me, but will be sure to share my results and thoughts, including more information about this option in future posts.

The other thing I've tried to do this year, is to share with everyone I can the importance of being educated about Lyme disease. It's just way too important, and WAY too late once you've got it. Oh how I wish someone had informed me before that fateful visit to the East Coast in the late summer of 2003! All our extended family have gotten several email reminders from me on the importance of awareness. Sadly, I think most people really believe that it's rare, and only exists in certain parts of the country. So the warnings go for the most part unheeded. Lately I've heard several radio spots on the importance of protecting yourself from West Nile Virus, sponsored by the Health Department. If only people understood that Lyme is SO MUCH more prevalent, and far more dangerous to the average American than WNV.

Probably most of the people I talk to about Lyme think that I'm a little over-zealous. I can understand that. It's a complex disease with a very confusing history, controversial in the medical community and at best, difficult to treat. Still, I feel the need to share and in the interest of time, I've tried to come up with "talking points" to discuss with people whenever I hear of someone suffering with mysterious symptoms like joint pain or fatigue that have remained undiagnosed in spite of visits to lots of doctors. I know what it's like to suffer through that for years, and it's so unnecessary! I feel like I have an obligation to share with other people so that hopefully someone can avoid that type of situation.

I've had a hard time with keeping the blog up-to-date this year, but I will write more about my escapades in future posts. For now, I'm fighting the fight, and for the most part, feeling better. That's always something to be grateful for!

Insights into Lyme Disease Treatment

We are currently reading an excellent book called Insights into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies. It is an excellent book that provides not only insights and perspective, but also validation. Lyme disease can be an isolating illness, especially since it is so little known and even less understood by most people, including many physicians, (I heard once that the average lyme patient has seen 8-10 physicians by the time they are diagnosed, sometimes more.) Each of the contributors provide honest and open discussion of the emotional, physical and mental challenges that can result from Lyme and it's related infections.

In addition to medications, treatments and supplements that are working, the contributors also discuss key issues that prevent optimal healing and how to avoid them. They've even included helpful sections on how family and friends can provide support, and what caregivers need to do to meet their own needs throughout the healing process. The book also includes detailed biographies, credentials and contact information for each of the contributors. It is one of the best books on Lyme disease that we've found.

What Kind of Outcome are We Hoping For?

A lot of people have asked me about what I have to expect in terms of treatment and recovery from Lyme. The answer is that I don't really know. Lyme disease affects each person differently, which is one of the reasons that it's so difficult to diagnose and treat. Still, there are similarities and we can point to generalities in trying to chart a course for treatment and recovery. I've blogged before about the course of treatment I've opted for, which is sometimes called combination antibiotic therapy or long-term antibiotic therapy. It's controversial, and according to the CDC it hasn't been proven to make a significant difference. But the doctors that do it (visit the International Lyme and Associated Diseases Society to find out more about the reasoning behind it) report that it works to improve and treat about 80% of patients at various stages of LD. Among the doctors that do it, (referred to as LLMD's or Lyme-literate medical doctors) and the patients that have received it successfully, (and there are lots of them,) everyone is in agreement that the treatment is measured in years, and not in weeks or months. This is hard to wrap your head around, since with modern medicine, we have become accustomed to taking "miracle" pills or procedures that usually make us feel better in a few days or weeks. Treating LD is a marathon and not a sprint.

The reality for me is that when I began this journey with my initial diagnoses in January 2009, the doctor's best estimate at the length of my treatment was between eighteen months to two years. Now over a year into treatment, we are probably looking at another year or two of antibiotic therapy, and continued immune support for the rest of my life. I've had a couple major set backs, but for the most part, my treatment has been going really well. There is no cure for Lyme disease, but it is possible to get it under control. It basically goes into a remission of sorts, or dormant, with the possibility of recurrence under the right conditions (like when your immune system is down because of illness, stress or other factors) -- kind of like chickenpox and shingles. This is the reason that I'll work the rest of my life to actively support my immune system.

For the forseeable future, I'll continue to do exactly what I've been doing. Then after a few more months of improvement, we'll gradually start to cut back on the antibiotics I'm taking, slowly weening me off the high doses I'm currently on. Over time, I'll be able to stop the antibiotics all together, which will be wonderful! Basically, each of these steps will be determined by how I am currently doing, and how many different symptoms I'm dealing with at each appointment. The decision to begin cutting back on the antibiotics will be made when I am either symptom-free or mostly symptom free. Some of the symptoms may be permanent damage from the effects of the infection and the inflammation it causes, rather than being caused by the active infection itself. Obviously, we are hoping to get rid of all of my symptoms, but only time will tell.

I know that antibiotic therapy is controversial, but I feel like it's saved my life, literally. Each day is a challenge, and this is definitely the most difficult thing I've ever done in my life, but it's worth it! I've had a paradigm shift over the past two months as I've begun to love taking my antibiotics. No longer an annoyance, I realize that they are helping me to get my life back, and I look forward to taking them...giving my body and my immune system the boost it needs right now, until it's strong enough to be able to fight on it's own. I'm grateful for the physicians who have been open minded enough to listen to their patients, and to take a risk in the hope of relieving suffering and improving quality of life. I know that this treatment has done both of those things for me, and I am anxious to continue it!

Right now, Bryan and I are taking each day at a time, working on challenges as they come up, and enjoying and making the most of my good days, (which are happening more and more often!) Bryan has a degree in Biology with a minor in Public Health, so he had to take some classes on infectious disease during his studies. He says LD is the craziest disease he's ever heard of. I have to agree with him. There are so many random symptoms and issues that come up at the strangest times. We aren't really too concerned with most of these things, since we now understand what's going on with my body and why. For a long time, we've had to deal with many more questions than answers. I think that we're finally to the point where we're beginning to turn that around. It feels great!

The Latest Update from Seattle

I had my 8 week appointment in Seattle last Friday and things went really well. Basically what I do at appointments is go over current symptoms with my doctor, have my vitals/reflexes/balance, etc. checked & documented and get the treatment plan put together for the next 8 weeks. I usually also have blood work done, (antibiotics are hard on the body, so it's important to check a lot of different things to make sure everything is on track.) It's important for me to remember that while it may not always feel like it on a daily basis, I have been making steady progress over the last 13 months. I try to think of setbacks as being temporary and when they happen, it just means we may have lost a battle, but we're still winning the war. It's hard to believe, but it's now been over a year ago that I was diagnosed with Lyme, and have been making trips to see my wonderful doctor in Seattle! NOTE: (In the picture below) my doctor really does have a name on the door... I photo-shopped it out since my treatment plan is fairly controversial, and I'd like to help protect my physician's privacy.

Since I have been responding really well to Alinia and the combination of other antibiotics/supplements that I've been on since December, we're going to keep things the way they are for the next several months. After the first few weeks on this particular mix, (which were really horrible weeks!) Bryan and I began to notice that my energy has been steadily improving. Over the last year, it has been really difficult for me to do simple tasks like laundry, sweeping, vacuuming or doing the dishes. During that time, I have had "bursts" of energy that have lasted sometimes several days, but they have always been followed by a "crash" that usually involves me spending several days in bed. We have noticed that especially over the last few weeks, I have had significant, steady energy and have been able to be up and out of bed in the morning, and able to do housework, laundry and other daily tasks for several hours at a time. It has been so wonderful. The one drawback has been that I have had a lot of nerve pain in different areas (very common in LD.) The pain tends to migrate from place to place and may be a result of herxheimer, which I've discussed previously. Basically, a herx, (even though it's no fun,) is a really good thing, because it means that the antibiotics are killing the bugs! None of the pains are new, they are the same symptoms that I've had over the last six years. The difference is they are sort of "fast and furious"...they come in much quicker succession and last a much shorter time than when I've experienced them in the past. That's also very common in an LD herxheimer reaction.

My doctor was ecstatic with the results of my bloodwork (everything was "normal" for the first time since I've been going to Seattle) and my reflexes and balance tests were all significantly better than they have been in the past. For these "tests" I have to do all these different little things, like holding my arms and hands straight out in front of me, standing on one foot, tight rope walking in a straight line, walking on my tip-toes and standing still with my eyes closed, (individually, not all at the same time!) There are a whole bunch of them, and basically they are designed to show problems with balance or equilibrium, tremors and any other CNS issues. They sound really simple, but believe it or not, some of them have been very difficult for me over the past year. This time, the only one I struggled with was standing on one foot with my eyes closed. I'm still having a bit of a problem with my balance on my right side. I guess my eyes have been making up the difference, so when they are closed it's very difficult for me to stay balanced. Having problems with this while standing on one foot is significant improvement over January 2009, when I would sway and almost stumble while standing still on both feet with my eyes closed.

The other significant improvement was that I was cleared for very light exercise, sometimes referred to as  "movement therapy." It's not really exercise, but keeping my body moving and starting to use my muscles again. Basically, I'm not supposed to do anything that increases my heart rate, which is pretty counterintuitive, since we learn from a young age that it's all about getting your heart rate up. I'm also able to do light weight training. When I first started all of this last year, my doctor had told me NO MORE WORKOUTS! Which wasn't a problem, since I barely had the energy to get out of bed each day. But, as a result of laying in bed and not working out over the last year, coupled with side effects of some of the medications that I've been on, I've gained 30 lbs. and feel like I've lost all of my muscle tone. To add insult to injury, none of my clothes fit me right now. Yeah....that's depressing. :) Anyway, now that I'm showing signs of substantial improvement, I can start to work back towards trying to be healthy. She wants me to start with 10 minutes of casual walking on my treadmill every day. Then after a couple of weeks, add one more minute a week, eventually working up to 20 or 30 minutes a day. It sounds ridiculously simple, but I did it this morning, and it was challenging for me. It also felt really good, and I think the small goals are great, because they're doable even if I'm having a bad day.

I'm really excited about all this good news, especially since my doctor said she thought that I was getting to the top of the mountain, so to speak. Hopefully, I'm now on the downward side of things, and the roughest part is over!

The Lyme Disease Map Project

I thought this was really interesting. It gives individuals the opportunity of posting their story and also where/how they contracted LD by placing a pin in the map. To view the project or add your story, go visit the Lyme Disease Map Project.

The Cat's Outta the Bag

Well, I officially outed myself on facebook. Until now I wasn't sure I wanted everybody to know that I have Lyme disease, since sometimes I feel like the "cootie girl." But when I get discouraged about everything that's going on, it helps me to think that perhaps I might help someone else avoid the same experience by sharing my experience with others. If you're reading this and you didn't know that I have Lyme, surprise! I contracted Lyme disease in 2003 while I spent six weeks with my mom in New England and got bit by a tick. Since then I have had mysterious symptoms, personality changes and debilitating illness which got continually worse until I finally got a diagnosis and started treatment in January 2009.

While Lyme is an extremely complex illness, it's highly preventable and very easy to treat in early stages. If you'd like to learn more about protecting yourself and your family, you can read through my post An Ounce of Prevention. I really hope in sharing this information I might be able to help someone avoid the suffering and frustration that this illness can cause. I started this blog with the idea that I wanted to keep a record of this journey for myself. But I'm hoping that in the process I can hopefully help others.

I've been on treatment for a year now, and sometimes I get really discouraged because I'm not better. When this happens, I have to remind myself that at the outset I was told that I would probably need to be on treatment for several years. It's a long process and I think that's why sometimes I feel overwhelmed. Tonight I was in such bad pain that I couldn't get comfortable. For the past three days I've had severe pain in my chest, along the joints that attach your ribs to your sternum. This morning I woke up with additional pain in the tiny joints in the bones across the top of my left foot, literally feeling as if I had broken my foot sometime during the night. I have also been really off balance this week, having to catch myself on counters, door jams or furniture to keep from falling. Coupled with the grinding fatigue which is an almost daily battle, sometimes it gets to be almost too much to bear.

I am so blessed to have Bryan, who is so patient and kind to me. Tonight he rubbed my foot with muscle rub, then ibuprofen cream, then helped me prop it up in bed so I could try to get comfortable. With the muscle rub on my chest too, I know I stink of menthol, but he says he doesn't mind. I found my rice packs and heated several up in the microwave, and they are helping a lot. One great thing is that I had tons of energy today, which was so NICE. I don't mean to come across as complaining. I recognize there are worse things, AND that I'm extremely lucky to finally have been diagnosed and getting treatment. I'm trying really hard to battle against discouragement and depression, and I'm lucky to have wonderful people in my life who help me do that. It has also helped to try to stay as busy as possible when I am able to. Life is an adventure with lots of challenges, and I think this is the biggest one I've ever faced.

Scary Stuff

This was the most current map I could find on the CDC website. It's from 2003. Infection rates have increased by 50% in some states, just from 2007 to 2008.

A Sure Cure for Nausea

Soda Crackers and Vernor's ginger ale. This isn't just any ginger ale. It's pretty potent, so I have to sip it, but it has helped with my nausea so much. It was first suggested to me by my dad's wife, Helen. She's an RN and it's a trick she picked up somewhere along the way.

The drawback is I haven't been able to find any in Utah. It's not a big deal though. Whenever I'm in Oregon or Idaho, I just go to the nearest Safeway and stock up. I think Vernor's is based somewhere in Michigan, so if you're interested you might be able to look them up. I didn't have any luck with finding a website on google, although there were lots of blog posts about it.

If you're lucky enough to live somewhere that there is such a thing as Safeway, you'll find Vernor's in the liquor aisle, where the mixers are. I love this stuff and try to have several six packs on hand at all times.

A Quick Follow Up

I'm starting Plaquenil (Hydroxychloroquine) again today. That is my fifth antibiotic pill that I'm now taking twice a day. As soon as we get back to Salt Lake I've got to get to the ophthalmologist, since Plaquenil can cause retinal damage, (it's reversible...so if they start to see damage they take you off the drug.) I saw the ophthalmologist six months ago when I started on it, so he could do a baseline exam of my eyes. I was glad that he was somewhat familiar with Lyme and he told me that Plaq. is one of the strongest antibiotics, the best to be on for Lyme. If I have problems, I will have to go off of it, but hopefully I can hang in there, since I know it helps me.

I've been on the Alinia (Nitazoxanide, Nizonide) for five days now, and I've noticed that the severe joint pain I was having for several weeks over Christmas has almost gone away completely. I have a little stiffness in my hands and fingers, but that's about it. I have noticed that my same abdominal pain (from fall 2008) has been back for the past week, but I only had to take pain meds for it once. I still have the Rx for Lortab the Dr. wrote for me back then when I had the exploratory surgery, so I only use it when I absolutely have to. I'm glad I have it, though...it's nice to have something to make me comfortable when it's really bad. I anticipate that the abdominal pain will probably only last for the next week or two. It seems like getting back on everything has triggered cycles of symptoms that have lasted 2-3 weeks at a time. This is pretty normal to Lyme treatment and is called a Herxheimer reaction. It's basically caused by neurotoxins released as the bacteria die off. When you first start antibiotics (or increase your dose) this happens. When it's bad, I tell myself it's a really good sign -- it means my body is starting to win the war, and the cavalry (antibiotics) are having success!! I will be glad to get everything normalized. Then we just have to figure out how to pay for everything so that I can stay that way. That's the trick. :)

My Current Treatment Plan

For the record, here is a list of my current medications & supplements, and the order I take them in:

AM #1: NO FOOD

Boluoke (enzyme) 2 caps

Nattonkinase (enzyme) 2 caps

Cysteplus (enzyme) 1 cap

Lactoferrin (enzyme) 2 caps

Heparin (blood thinner) .25 ml under tongue

AM #2: (30 minutes later) WITH FOOD, ON FULL STOMACH

Doxycyclene 150mg

Biaxin (Clarithromycin) 500mg

Alinia (Nitazoxanide, Nizonide) 500mg

Placquenil (Hydroxychloroquine) 200mg

Diflucan (Fluconazole) 100mg (monday, tuesday, wednesday only)

Enula (anti-bacterial supplement) 1 dropper full

Quina (anti-bacterial supplement) 1 dropper full

AM #3: (1 hour later)

Theralac (probiotic) 2 caps

Saccro B (probiotic) 2 caps

Vitamin D (5,000 IU) 1 cap

Transfer Factor Multi Immune 2 caps

NT Factor Energy (for fatigue) 2 caps

LymPlus (specific immune support) 2 caps

Omega 3, 6, 9 Oil supplement 1 cap

Multi Vitamin 1 cap

AM #4: (1 hour later)

Pectasol C (toxin binder) 6 caps

PM #1: NO FOOD

Boluoke (enzyme) 2 caps

Nattonkinase (enzyme) 2 caps

Cysteplus (enzyme) 1 cap

Lactoferrin (enzyme) 2 caps

Heparin (blood thinner) .25 ml under tongue

PM #2: (30 minutes later) WITH FOOD, ON FULL STOMACH

Doxycyclene 150mg

Biaxin (Clarithromycin) 500mg

Alinia (Nitazoxanide, Nizonide) 500mg

Placquenil (Hydroxychloroquine) 200mg

Enula (anti-bacterial supplement) 1 dropper full

Quina (anti-bacterial supplement) 1 dropper full

PM #3: (1 hour later)

Theralac (probiotic) 2 caps

Saccro B (probiotic) 2 caps

Transfer Factor Multi Immune 2 caps

NT Factor Energy (for fatigue) 2 caps

LymPlus (specific immune support) 2 caps

Omega 3, 6, 9 Oil supplement 1 cap

PM #4: (1 hour later)

Pectasol C (toxin binder) 6 caps

I know this looks like a crazy amount, but once I'm taking all of them and in a regular routine, they really have helped me so much. Ironically, aside from supporting my immune system, most of the supplements I take are to help support my body and help counteract issues that could be caused by long-term antibiotic use. I have read horror stories of people who get systemic yeast infections, and have terrible side effects from the antibiotics, and I haven't had to deal with any of that. I'm a believer in using these supplements, especially the probiotics. I am also a believer in all the antibiotics. Since starting all of this gradually between January-March 2009, I have seen such a huge improvement in my overall health.

I feel so lucky to have finally figured out what was happening to my body...I felt like I just kept getting worse and worse with no explanations. When I found a dr. that would ask the right questions and order the right blood tests, it was obvious why it had become so difficult for me to function. My body had been brewing six different (and serious) bacterial infections for almost six years! And as for the antibiotics themselves...for me it's obvious that the more I'm on, the better I actually feel. It's pretty amazing. Toward the end of the movie Under Our Skin, there's a quote that I really like: "there is this myth out there that antibiotics are somehow bad for you. I just have to say, if you have a fatal infection, they're certainly not bad for you!" They are giving me my life back, and I am so grateful for them!!